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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 surviving on June 21, 2007, at 23:37:04
This is my first time on this site...don't even know how I found it, but am glad I did.
I'm a cancer survivor...6 yrs out. Before cancer, I was an outgoing, social, energetic mother and Pastor's wife. Never liked meds of any kind or needed them. But a radical neck disection surgery in 2001 nearly did me in. Afterward, I had panic attacks 24/7, only slept 2 hrs each night for 3 months, lost down to 100 lbs, shook constantly and uncontrolably and almost gave up completely. Had it not been for my 2 wonderful daughters...i might not have made it. My husband was fired and with that went our friends.
Since then, it's been a roller coaster ride to get help. I felt like a research project...I'm sure many of you can relate. I tried every SSRI with no success, and finally found my way to a Pdoc. He put me on 6 ml daily of Xanax, 200 ml of Wellbutrin, and Remeron. That's what it took to bring me back from wherever I had gone.
I watched an old family video 2 nights ago and wondered who that person was who looked like me...I don't know her anymore.
I have weaned myself to 2 ml daily - Xanax...stopped the Wellbutrin for almost 2 yrs....but had to start back on it 3 wks ago. I'm living in a world I didn't know existed and finding this website has made me feel more 'normal' than I have in 6 yrs. I still want to get off the meds and not wake up in a panic at night, but will continue to take it one day at a time.
The wellbutrin doesn't seem to be helping with the Depression, but my Pdoc wants me to stay on it. Xanax helps alot...without it, I can't function at all, I just sit and stare.
Any suggestions or advice would be appreciated. My life today is just surviving and crying in secret so my children don't see.
Posted by Mawari on June 22, 2007, at 0:00:26
In reply to Desparate for change, posted by surviving on June 21, 2007, at 23:37:04
Hope you get back to where you were seven years ago. Change is always difficult and if you feel like your world caved in, just hang in there and it will get better.
God bless you.
Posted by missjulie on June 22, 2007, at 1:03:47
In reply to Desparate for change, posted by surviving on June 21, 2007, at 23:37:04
I'm so sorry to hear how bad this has gotten. Just want to make sure I understand - the combination your pdoc put you on finally pulled you back to "normal" functionality... then you slowly weaned yourself off pretty much everything because you didn't want to be med-dependent... symptoms came back and now you're restarting wellbutrin? is that right? The thing that strikes me is your desire to be med-free... I am guessing because you spent a good part of your life happy and healthy before your cancer crisis you don't want to be psych drug dependent. It must be very hard to accept that you need them, but you can't live this way... it's hardly "living" as you well know...if you can find the right combo you can be that person in the video again... PLEASE stick with the wellbutrin for awhile given its former efficacy and if that doesn't work try something else... and what's wrong with taking xanax if you NEED it?? sounds like you have a good psych dr, a blessing...and when you find the right combo again don't EVER go off it till the day you die. PERIOD.
(If I am way off on this please don't be offended; wasn't quite sure the exact sequence of events/why quit wellbutrin in first place if it worked)
regards julie
Posted by meAgain on June 22, 2007, at 1:17:50
In reply to Re: Desparate for change, posted by missjulie on June 22, 2007, at 1:03:47
i wish i never got put on any med ever, it has crippled my inner being..i am finding relief through finding my spirit and who i truly want to be and the value of life in this life..i am dealing with it day by day.God bless..
Posted by Squiggles on June 22, 2007, at 8:33:10
In reply to Desparate for change, posted by surviving on June 21, 2007, at 23:37:04
> This is my first time on this site...don't even know how I found it, but am glad I did.
>
> I'm a cancer survivor...6 yrs out. Before cancer, I was an outgoing, social, energetic mother and Pastor's wife. Never liked meds of any kind or needed them. But a radical neck disection surgery in 2001 nearly did me in. Afterward, I had panic attacks 24/7, only slept 2 hrs each night for 3 months, lost down to 100 lbs, shook constantly and uncontrolably and almost gave up completely. Had it not been for my 2 wonderful daughters...i might not have made it. My husband was fired and with that went our friends.
>
....I just read your new post, and it's very sad
indeed. Congratulations on your successful fight with cancer. I hope your doctor can keep you stable as time goes by.One thing that i am curious about is your panic attacks, which i guess you did not have before your neck surgery. Have you been told why those panic attacks started after? Do your drs. know why they started? I am guessing about the thyroid because i had panic attacks related to that and was very well adjusted with thyroid medication.
Best wishes for better times,
Squiggles
Posted by surviving on June 22, 2007, at 10:19:14
In reply to Re: Desparate for change, posted by missjulie on June 22, 2007, at 1:03:47
Thank you for responding...i was afraid no one would. You understood very well. The 2 words most used by people to describe me before were 'bubbly' and 'positive'. I was a very well adjusted, happy, optimistic person. Tylenol was about the strongest drug I knew. Then a tumor came up on my tonsil and was misdiagnosed...so my dr. took out my tonsils, exised the inside of my mouth..(means taking off the outer layer of tissue in your mouth) and 2 days later called with the news of cancer. He wanted me to have radiation...but I didn't trust him anymore and went to Mayo Clinic for a 2nd opinion. They did the radical neck disection and re-exised the whole inside of my mouth because my first dr. did a bad job of it. Mayo also had to do a lot of repair work inside my mouth. Because of the surgery, I couldn't swallow well or eat solids for a couple of months. Thus the weight loss and no sleep. Mayo also had to remove the saliva gland on the left side of my jaw, resulting in very bad dry mouth which resulted in not being able to sleep. I would start choking for lack of moisture after about 2 hrs. This went on for months. Mayo also removed the jugler vein in the left side of my neck and all the tissue on that side. Recovery from all this was horrific and my drs here didn't know how to help. I live in a small town.
After 6 months, I was going downhill fast and my husband was desperate...so we started going to different drs and found an ENT (ear, nose & throat) dr who was wonderful. He told me that I would die soon if I didn't get the proper help and sent me to a physical therapist who untimately got me to a pdoc. By this time, I wouldn't let anyone touch my throat. That's when the momentum changed from downhill to up and I got on the meds. Just having a dr tell me that he cared about and understood what was happening to me was like a drop of water in a desert.
After 6 yrs in remission, my oncologist wanted me to get a family dr., which I did. He is the reason i stopped the meds. He doesn't like anti-depressants, so he took me off the wellbutrin. After a couple of months, he said Xanax is addictive and started cutting me back.
I started getting bad again and had not been to my pdoc for 2 yrs. so i went last month and have been back on wellbutrin and 2 ml Xanax for 3 wks. I'm on 150 ml wellbutrin XL, but everyone on this site seems to talk about wellbutrin SR. I don't know the difference, but the wellbutrin in not working well this time.
Sorry this is long...I haven't had anyone to talk to about these kind of things...so I am so grateful just for your reply.
Posted by Phillipa on June 22, 2007, at 11:14:17
In reply to Re: Desparate for change, posted by surviving on June 22, 2007, at 10:19:14
That's horrible about your regular doc glad you're back with the pdoc give him some time to find a good combo for you. You've had a horrible time. Love Phillipa
Posted by surviving on June 22, 2007, at 11:32:30
In reply to Re: Desparate for change, posted by missjulie on June 22, 2007, at 1:03:47
Thank you for responding...i was afraid no one would. You understood very well. The 2 words used to describe me before were 'bubbly' and 'positive'. I was a well adjusted, happy, optimistic person who seldom used meds of any kind. Tylenol was about the strongest drug I knew.
Then a tumor came up on my tonsil and was misdiagnosed. My dr. removed my tonsils and exised the inside of my mouth (that means removing the top layer of tissue) and 2 days later called with the news of cancer. He wanted me to have radiation but I had lost confidence in him and went to Mayo Clinic for a 2nd opinion. They did the radical neck disection and re-exised the inside of my mouth because my 1st dr did a bad job. They also did a lot of repair work, took out my left jugler vein, all the tissue in the left side of my neck, and the large saliva gland on the left side of my jaw. I couldn't swallow well or eat solids for 2 months, resulting in the weight loss and no sleep. After 2 hrs. I would start choking for lack of moisture. This is when the shaking on the inside started and the panic attacks.
After 6 months I was going downhill fast. I live in a small town and couldn't find a dr who knew what to do to help. My husband was desperate because I was pretty much bedfast and my children had to take care of themselves (they were 10 and 16). We finally found an ENT (ear, nose & throat) dr who told me that I would die soon if I didn't get help. He sent me to a physical therapist who ultimately got me to a pdoc. That's when it changed from downhill to up. I got on the meds and began to improve.
I was tired of trying different drs so when I found a good oncologist, I let him do everything a family dr would. After 6 yrs of remission, he wanted me to get a regular MD, so I did. This new dr. doesn't like anti-depressants and took me off the wellbutrin. He then said that Xanax was addictive and started cutting me back. I was agreeable because I had never had to be on meds before and thought he knew best. I was taking 2 ml Xanax at that time. I actually felt ok for a while off the wellbutrin, but cutting the Xanax down to 1ml a day was when things started getting bad.
I had not seen my pdoc for 2 yrs. and things got so bad that I went to see him 4 wks ago. He upped the Xanax to 2 ml daily and re-started the Wellbutrin. He didn't like the other drs advice. It's only been 4 wks. now, but the wellbutrin is not working well. I'm taking wellbutrin XL, but everyone on this site talks about wellbutrin SR. I don't know the difference. I'm calling my pdoc today to let him know my progress...but think I need to change to something else, I just don't know what.
I wake up every morning with such a feeling of dread that I start to shake and have to hit the Xanax (it really helps with the shaking). But I have no motivation to get up or do anything. I used to love horses and rode a lot, but now I can't stand to look at my horse. My husband has to take care of her. I don't want to leave my house. I don't enjoy anything. That's why I don't know who I am. I was so different before. I woke up happy, excited for the day, involved in so many things, and lived life to the fullest. Do you think I can ever experience any of those things again? I've tried therapy with several different therapists, but it didn't help.
Sorry this took so long for you to read. I haven't had anyone to talk to about these things and I'm just so grateful that you responded.
Posted by surviving on June 22, 2007, at 11:42:46
In reply to Re: Desperate for change, posted by surviving on June 22, 2007, at 11:32:30
Sorry I sent my post twice. I'm new at this and thought I had lost the 1st one, so I tried to remember what I said and re-typed it.
Posted by missjulie on June 22, 2007, at 12:49:36
In reply to Re: Desperate for change, posted by surviving on June 22, 2007, at 11:42:46
No worries, I mess up posts all the time! I have some thoughts that I will send later (for whatever they're worth) but could you just confirm -1) the video you were watching - was that when you were being properly psych medicated or before you got sick at all with the cancer (I'm sorry; that whole ordeal sounds just dreadful). I'm trying to figure out if you are hoping to get to where you were BEFORE all your health problems (which just may not be feasible after such a catastrophic health problem) or after you saw p-doc. 2) It is more your GP who's against antidepressants, NOT YOU, right? Or do you agree with him? If you need them you need them... I firmly believe it's all chemistry... and most drs. will never understand the anguish you are going through. More later best regards
Posted by surviving on June 22, 2007, at 16:01:40
In reply to Re: Desperate for change, posted by missjulie on June 22, 2007, at 12:49:36
missjulie,
The video was the year before the cancer. I have always taken tons of videos and pics. I'm the mom always embarrasing her kids with the camera. But this was the first time I've been able to watch any of them since the illness. It really shocked me to see myself as I was...laughing and playing. I also dyed my hair brown for some unknown reason after the surgeries...i was blonde before. A lot of people who have had this type of surgery are a bit disfigured, but I was blessed to have a good surgeon at Mayo and just have a 6 inch scar which goes from behind my ear to the middle of my throat and another one 3 inches below it following the same lines. I don't mind the scars at all. It wasn't the physical appearance of myself that threw me...it was the personality difference. I was always very positive and confident and now would define myself as negative and fearful. I also had a lot of friends and was very social...every weekend having someone over or going places. Now the phone doesn't ring much ...for me anyway. I've had a friend for 20 yrs who has stuck with me and my horse riding buddy still calls for me to ride...I just can't deal with that right now. I'm not going to try to watch any more videos for a while till I'm better.The GP who took me off the meds is no longer my dr. That's something I did learn from all this...a bad dr can kill you. I got a new GP and saw him for the first time the day before I saw my pdoc a few wks ago. The first thing he said was to get back on meds, but wanted me to see my pdoc for his opinion. I like this dr a lot.
So, in summary, I guess I just want to be happy again and be able to enjoy my family and what life I have left. I have never liked to be on meds...I'm afraid of the damage they can do to your body. The whole side effect thing wigs me out. I was just reading on the internet about wellbutrin and it said not to mix it with Xanax. Those kind of things bother me. I'm also afraid of being dependent on drugs and then they stop working. I'm terrified of ever going back to that dark place I was. I really don't think I would survive that again.
My pdoc diagnosed me with severe depression, post traumatic stress syndrom and chronic anxiety. He believes it was brought on by the stress of the illness and aftermath. I should have gotten involved with a support group but didn't think of it. He said i had drained my brain of the chemicals it needed from the prolonged stress.
Please don't think you could ever offend me with whatever you have to say. Even if you disagree or have a completely different opinion...I will respect and appreciate it.
Thank you for taking your time to try and help a complete stranger. You are a jewel.
Posted by surviving on June 23, 2007, at 1:28:13
In reply to Re: Desparate for change » surviving, posted by Squiggles on June 22, 2007, at 8:33:10
Thank you for responding. I had my thyroid checked over the next 3 yrs after the surgeries...it was ok.
They took out a saliva gland during surgery and I would start choking a lot. It felt like a rope was constantly tightening around my neck...maybe from all the stitching...they didn't use staples. I would wake up in the night choking and had ice by my bed always to help. I think that's what caused the panic attacks to start. The first ones were at night and then started happening at any time. I never asked my drs why they thought they started.
How long did you have attacks and had you ever had them before?
Posted by surviving on June 24, 2007, at 0:11:22
In reply to Re: Desparate for change, posted by Mawari on June 22, 2007, at 0:00:26
Thank you for the encourgement. It helps a lot to talk to someone who truly does understand. Most of the people in my world tell me to 'snap out of it'. I would if I could. I went for months without meds and got myself in a bad place. My sister even told me I was faking to get attention. So finding this site has been a huge blessing for me.
I didnt realize depression was so widespread.
I hope you are doing well.
Thanks again
Posted by surviving on June 24, 2007, at 0:31:12
In reply to Re: Desparate for change, posted by meAgain on June 22, 2007, at 1:17:50
What meds are you on and how long have you been taking them?
I still believe it's possible to get to the place where you don't have to be on them. I may be wrong...I guess time will tell.
You shouldn't let it bother you to take them if you need them. Your 'inner being' can be healthy even if your chemistry is not.
Each experience we have in this life can bring forth positive things. Finding your spirit and who you want to be and the value of life are all very positive things. You may come thru this time and be a stronger and better person than you were before...even able to reach and help people because you truly understand what they're going thru.
Dealing with life day by day is not such a bad thing...it keeps things in perspective.
...and God really does bless! Hang in there and always believe.
Posted by surviving on June 24, 2007, at 0:51:15
In reply to Re: Desparate for change » surviving, posted by Phillipa on June 22, 2007, at 11:14:17
> That's horrible about your regular doc glad you're back with the pdoc give him some time to find a good combo for you. You've had a horrible time. Love Phillipa
I'm just learning about combo's. I didn't realize drs mix several drugs together. You seem to know a lot about this...I've read some of your comments on other posts. I'm wondering what you think about alternatives to drugs (herbs, etc). I wanted to try SAMe before I started the wellbutrin, but it got so bad I had to do something fast. I was afraid the SAMe wouldn't work well enough. Do you have any info on good alternatives.
Posted by Honore on June 24, 2007, at 10:51:55
In reply to Re: Desparate for change, posted by surviving on June 24, 2007, at 0:31:12
Hi, surviving. I was so amazed and touched by your story of everything that you've been through. You've done a great job, just holding it together with so much physical and emotional trauma. I really think you underestimate how much you've accomplished, in that and in realizing that this GP who was against meds was harming you-- and getting away from him.
That alone tells me that you're making a lot of good decisions.
There's really nothing wrong with being on meds-- and whether you always need them or not-- it doesn't change who you really are.
I was deeply depressed for most of my life because I didn't believe in meds, and my family was against them. So I only considered it in the past five or six years. But I'm more my real self now than I was after I got depressed-- and without them, I wouldn't be able to get access to that again.
I don't know if you'll get back exactly to the person you were before. You've had experiences that may have deepened and perhaps saddened and disturbed you-- that you hadn't had before. And you've seen things you might not have known about-- for good and bad. You might be bubbly and happy, again, but also have these newer sides of yourself that give you a different perspective-- and a deeper appreciation of certain things.
But there's a lot of reason for hope for the future. It does take time-- and possibly working at it-- but mostly time and new, good experiences, which can again become the center of your life.
Honore
Posted by Justherself54 on June 24, 2007, at 17:26:23
In reply to Re: Desparate for change » surviving, posted by Honore on June 24, 2007, at 10:51:55
I too am touched by your story..you are a survivor. I was misdiagnosed for almost 20 years as just having bouts of depression..It wasn't until I had a prolonged hypomania followed by one of the worst depressions I have ever experienced that I was properly diagnosed as bi-polar..
There is a song from a movie called Shirley Valentine..it's called the Girl Who Used to Be Me.
and one of the lines is I wish I had the chance to find the girl who used to be me..that's my goal also..I know what it's like to lose yourself along the way from depression.I didn't want to be med dependent either, but I now am able to socialize with my friends (not as much as I'd like), enjoy my grandchildren and I feel more engaged with life. I know I wouldn't be at this stage without medication..nowhere near..
With the help of good pdoc you will find the girl who used to be you..it may take a lot of medication trials and "drug cocktails", but you will slowly and surely get there..
My thoughts are with you..
Posted by Phillipa on June 24, 2007, at 19:41:43
In reply to Re: Desperate for change, posted by surviving on June 24, 2007, at 0:51:15
Surviving we have an alternative board too. Not used quite as much as the main meds board but a lot of knowledgeable people with vitamins herbs ets. Anything by Larry Hoover he's a genius so I suggest you post this there too and maybe someone with real knowledge of herbs and such will answer you. I don't use herbs. Love Phillipa
Posted by missjulie on June 24, 2007, at 21:06:13
In reply to Re: Desparate for change » surviving, posted by Honore on June 24, 2007, at 10:51:55
Hi Surviving - gosh I simply couldn't add a thing to what Honore said... beautifully stated... I do think you can become close to who you used to be again... hope all this input has encouraged you to stay on psych meds if necessary... and if you want to go "natural" there's TONS of options out there... just google "natural antidepressants" and you'll see all kinds of remedies and vitamin/herb sites. (I've tried a bunch over the years that didn't work for me... SAME in particular gave me a stomachache that landed me in the emergency room, and they told me they'd heard of this before so try it cautiously the first week if you go that route! but don't let this stop you) Also, along natural lines, you mentioned your horses... a friend of mine actually started a program for depressed teens to have "horse therapy"... she is a real believer... and having some amazing success. And if you can still find a support group you should GO... better now than never... your cancer experience leaves you with other health issues that I imagine other survivors can better understand... wouldn't be at all surprised if others fell into a deep depression after their recovery too. (devastating depression is very common after heart surgery, I know) Be nice to have someone in town to see/confide in personally as well as internet!
Many many people are in your boat (as you can see) and wishing you all the best. keep me posted. warmly missjulie
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