ANA Discussion Forum

Post-Treatment => Cognitive/Emotional Issues => Topic started by: milhaus on February 23, 2015, 05:48:19 am

Title: In a Crisis
Post by: milhaus on February 23, 2015, 05:48:19 am
I'm in a tough spot, and was just hoping for some support or words of wisdom.

I am 25 years old, and almost 1 year out from my last surgery. It seems most people on this forum have established careers by the time of their diagnosis, but I am in the awkward position of trying to begin one. My diagnosis came the summer before my last year of college and I had two trans-lab surgeries that year while still managing to graduate.

I banked heavily on the idea that I was going to go to graduate school and become a researcher, and because I was so confident in myself I had no problem taking out large amounts of student loans to pay for my schooling.

My tumor put the idea of grad school on hold temporarily (or permanently). Now I am working overtime at a relatively low paying job, getting only every other weekend off. I am certainly not making enough money to provide for my family and pay off my student loans at the same time.

I want to go to grad school, but I dont even know if I can do it anymore. I will find out how large my remaining tumor is in one month. In the meantime I feel like I just can't keep up with life anymore. I am dizzy all the time everyday, I have no energy, my brain is always in a fog, I don't feel as smart as I used to, I am half deaf, half blind, and so stressed I have developed an ulcer.

My house is messy, my dogs are unwalked, I need to study for the GRE, and I just don't have the energy or well being to tackle any of it. I am so miserable all the time, it takes everything I have just to make it through work. When I get home there is just nothing left.

I feel like I am being forced to run in front of a truck. I have to keep running and running no matter how tired I get because if I stop I will be run over. I'm 25, I have my whole life ahead of me, I have a wife who wants children and two dogs to take care of. I have to finish school or develop a career somehow or I will let them all down, but I can't even take care of myself. 

The pressure just makes me sick. I feel so trapped and hopeless. I can't see a way out. Sorry for the depressing post, but I need help. One of these days my legs are just going to give out and I will be run over by the truck.
Title: Re: In a Crisis
Post by: CHD63 on February 23, 2015, 07:28:14 am
Hi milhaus .....

I took time to read through your previous posts and as I suspected, your journey through diagnosis, treatment, and recovery has been a very rough one.  That being said, you are at a point where you really need professional help with someone who can see you face to face ..... medical intervention via medication(s) may be needed, as well.

In the meantime, please know that many of us have experienced the ongoing fatigue and brain-fog associated with having had surgical removals of our ANs.  There are many posts on here describing these issues.

What to do?  Many of us have:  1) found professional help (often starting with a medical doctor we know and trust)  2) learned to take 5 minute naps when the fatigue and/or dizziness hits 3) learned yoga meditation techniques 4) reduced our caffeine intake 5) prayed a lot, etc. etc.

It really is important to seek help, whether it be through a trusted doctor or a trusted spiritual adviser.

Many thoughts and prayers.

Title: Re: In a Crisis
Post by: NYLady on February 23, 2015, 10:48:22 am
Hello Milhaus,

Your post really touched my heart....

Clarice is right in advising you to talk to a trusted professional.  There are meds you could take and coping mechanisms you could employ and a professional will help you find what  could make going through this difficult time easier.  You are so young and you DO have your whole life ahead of you.  Your recovery is exactly that...YOUR recovery.  Each of us is different and respond differently to the treatment we chose.  Some folks have an easier time than others but you have to find what helps you to cope.  You have had a lot to deal with, without question, but hang in there please and don't give up on yourself.  There is always hope Milhaus.  Know that here, in this place, there are people who understand, who care and are here to listen whenever you need to reach out.

Wishing you the best,

Title: Re: In a Crisis
Post by: Mimispree on February 23, 2015, 02:00:53 pm
Dear Milhaus:

Wow, I got chills when I read your post, because although I'm on the other side of the scales of life (54, and heading towards the end of my professional life) I could have written exactly the same thing about my physical, mental and emotional state, and even the part about the messy house and unwalked dogs.

I have to commend you for graduating!  That is amazing!  It reveals so much about your character and toughness.  It also reveals how much energy (that you somehow generated) you spent on getting yourself where you are today.  You should be exhausted because you had a goal and you accomplished it against all odds.  You had to shove aside your own personal reality (physical and cognitive weakness) in order to accomplish your goal and now that you did it, you have the time to accept how hard your new condition makes your life, and maybe you even grieve how easy life was before you had the surgery.  I know I do. 

It's almost impossible what you accomplished, but you did it and as someone who can relate with your physical and cognitive state I know you must have discovered some sort of super-power.  I send you my most heartfelt congratulations.

Are you doing any vestibular and/or occupational therapy?  You probably didn't have time but now that you're graduated, maybe you can make time for it before your graduate studies.  I have read plenty of posts that demonstrate the success of these therapies.  I'm getting extensive balance testing done in early March and they will be designing specific therapies for the damaged parts of my brain/nerves.

Also, I often think I'm depressed, but it's actually anxiety:  The way you describe running in front of the truck is very familiar.  A VA doctor diagnosed me with PTSD years ago and I took part in a two year study that included medication and regular talk therapy.  I hated it, but after about a year and a half, my life changed and I experienced life without constant anxiety.  There have been many, many ways my life has changed for the better.  After the two years I didn't feel the need for medication and I stopped taking it.  I was fine until after my Translab surgery.  Now after seven months post-op, I realize that I need my anti-anxiety medications to handle my "depression."  Because of my past experience, I am not fighting taking the medications because I know it will be temporary, it will work, and it doesn't change who I am.

There are times when I think something is wrong with me because I'm not doing better post-surgery and I often read other posts where people are doing much better.  I have even wondered if I'm somehow causing this dizziness and foggy brain and head pressure, etc., etc. myself.  It's because I've always fought whatever challenges I've faced, but this one is winning and I don't know how to deal with it.  That's the source of my anxiety. 

I am grateful for your honest posts because it reminds me that I'm not alone feeling like I do.  I want you to get better and I want to get better.  Hopefully vestibular therapy, medication and time will make a difference and life will get a bit easier. 

I wish you the best of luck and patience.

Be well,
Title: Re: In a Crisis
Post by: Susan59 on February 23, 2015, 08:58:56 pm

As the previous posters have suggested, please, please, seek out some professional help. Like you said, you are only 25 years old and you have a long, wonderful life ahead of you!

You do not have to feel this way forever. There is help out there but you must take the first step. Please take that first step - you have nothing to lose and everything to gain!

If you feel like you cannot "afford" professional help, just go to your local health dept. and let them direct you.  That is at least a starting point.

Everyone here on this forum understands where you are coming from - we care.  Please reach out for this valuable help and keep us posted.

Title: Re: In a Crisis
Post by: milhaus on February 24, 2015, 04:23:00 pm
Thank you all for your posts and encouragement. I did do some VR after my first surgery, and I felt like I was making big improvements at the time. I assumed I would just keep getting better but I must have hit a plateau when I stopped because I don't feel any better. Maybe I should look into balance testing.

I really appreciate your post as well Michelle because I see so many posts from people relaying their success stories and sounding so positive and I just feel disheartened because I can't figure out why I am not getting over this like they are.

I think my wife and family are compassion fatigued, and I don't blame them. They have had to deal with this for a long time too. I think working so hard and finding so much success before has left me in a difficult place now because people expect so much of me. I am like the hare in the tortoise and the hare story. I wanted to win so I started with everything I had and now I am running out of fuel before the race is finished.

I have scheduled an appointment with a GP for Thursday.  My plan is essentially just to level with him and tell him everything and see what he has to say. I am sure I could benefit from an antidepressant, but I hope there is more they can do for me than that.

Title: Re: In a Crisis
Post by: NYLady on February 24, 2015, 08:35:42 pm
Hello Again Milhaus...

So glad you will be seeing someone.

As I said previously, no doubt you have had a lot to deal with, and still do.  Just so you know, you may read many positive posts here, and encouraging ones, but rest assured we are all dealing with issues.  For some, those issues are severe, and others while not severe, sorely impact their quality of life from day to day.  By coming here, many of us hope to help someone by either sharing our story or helping them get through a bit of time that they find is difficult.  You have brought up a very good point...there is another side.    Maybe it would be a good idea if we started a thread that would tell what treatment we have had, when we had it, and just what are the effects of that treatment on our everyday lives.  I say this not because we should promote the negative side of things, but to encourage those of us who are struggling with our own battles to realize this is how AN's are.  When you can see the variety of situations, how people are dealing with them and see the effect this condition has on so many, I think it will go a long way in assuring those who doubt themselves to realize why it is this forum is so special and why we do understand and care for each other.  By sharing what has helped us, we in turn, will help others.  Thank you Milhaus....As you can see, Michelle shared her story with you and it helped.  Keep coming back, I think there will be others who respond to this.  Best to you....hang in there.

Title: Re: In a Crisis
Post by: Mimispree on February 24, 2015, 09:43:09 pm

The thread you were talking about describing your individual surgery, situation, etc. may be put on your profile so everyone can see a snapshot of your medical story.  I personally find it very helpful.

Be well,
Title: Re: In a Crisis
Post by: milhaus on March 02, 2015, 06:42:28 am
Saw a GP a few days ago. Getting started on an SSRI. The doc also said I could try starting something like carbamazepine to help with the dizziness. I'm not going to take that stuff though, because from my research its not good to take anything for dizziness long term because it disturbs your body's ability to compensate. I have a very strong fear of medication too which is part of why I seem to delay getting help for anything for so long, and then don't stick with the treatments well. I am seeing my otoneurologist on March 30. Maybe he can refer me to VR or recommend something else.
Title: Re: In a Crisis
Post by: Mimispree on March 02, 2015, 05:55:08 pm
Hi Milhaus:

I started taking my anti-anxiety medication last week and your email helped me to make this decision.  I thank you because in just one week my intrusive depressive thoughts have been greatly minimized and I'm grateful. 

Because I had severe Trigmenial Neuralgia pain before my surgery, I was given carbamazepine and Tegretol (sp?) because as neuron blockers they helped dull the pain.  However, I had to deal with feeling dopey all the time and while on these medications I became even more depressed. 

I am perplexed why your doctor prescribed you a neuron blocker for your anxiety.  However, before my PTSD diagnosis I thought I had depression so a doctor prescribed an antidepressant which didn't work for me.  My depression stems from anxiety and with all you have going on, you may want to talk to a doctor about anxiety.  So getting the right diagnosis is key.  It is always advised to do talk therapy in conjunction medication, especially at first to help make sure you are being treated corrected.

By-the-way, the anti-anxiety medication I take doesn't change my personality at all.  Plus, I don't have side effects.  I put off taking medication until I no longer trusted myself.  I suffered for decades.  Now the only regret I have is waiting so long, for myself and my family.

Be well,
Title: Re: In a Crisis
Post by: milhaus on March 03, 2015, 02:09:23 pm
The carbamazepine wasn't prescribed for anxiety. It was prescribed for dizziness. I was diagnosed with OCD several years before my AN diagnosis, and I went to therapy and took meds for that for years. I know I still have anxiety issues as well and I know the SSRI will probably help with that. At this point I don't think I can go back to therapy, because my dad would have to bankroll it and he probably won't be too excited about the idea after already paying for a couple years of it and helping with all my other AN related medical expenses.

Title: Re: In a Crisis
Post by: evestew1 on March 09, 2015, 11:21:09 am
Hi Milhaus,
I really feel for what you are going through, you sound understandably very overwhelmed.  Have you talked with your family about how low you are feeling?  You sound like a very strong and successful person - although you are struggling on the inside, you may not show it and people around you may assume you are fine.  This happens to me quite a lot -- people will say "it's amazing how calm you are" - meanwhile inside I'm a wreck!  Anyway, it sounds like you want to spare your family from further impacts of your AN recovery but I hope you will stay open to letting them help you emotionally through this journey. 

Regarding your anxiety, have you tried meditation?  It has helped several of my friends and family overcome their anxiety and I am working on developing a practice.  UCLA has a mindfulness center that offers several free meditations that you can stream or download. I highly recommend giving it a try!

Finally, I wanted to note that I have been taking oxcarbazepene at a low dose (450 mg/day) for about the past 6 months.  Like Mimi I had severe trigeminal neuralgia prior to AN diagnosis and my neurologist prescribed it to prevent abnormal nerve firing. Apparently it is also sometimes prescribed for depression and bipolar. In terms of side effects, I did feel a little sleepy when I first started taking it but after about two weeks I felt totally fine and there are no ongoing side effects except that I can't tolerate alcohol.  Apparently this is a fairly "old" medication developed in the 1950s and considered very safe. So if your doc thinks it could help, maybe it is worth a try.  I'll be going off it soon now that my tumor has been removed (I'm hoping/assuming the trigeminal pain won't return).

Several years ago, when my I was going through a hard time, my dad sent me a quote from a poem by Robert Frost: "the best way out is always through". This thought  has helped me so much and sustained me through various difficulties, reminding me to just keep going to get to the other side, and you WILL get there, eventually.

I'm rooting for you!
Title: Re: In a Crisis
Post by: Mimispree on March 09, 2015, 07:28:52 pm

Thank you for the meditation link. 

Title: Re: In a Crisis
Post by: milhaus on March 12, 2015, 02:25:12 pm
Thanks for your reply and support Eve. There are so many things I can try: exercise, meditation, VR, medication, and I am working in those directions. Had a bit of a set back today though. Woke up from a nap with severe dizziness and unsteadiness like I haven't had in a long time. It was so bad I ended up in the ER. They think my high BP (160/104) and anxiety were making the dizziness worse. So I am getting treatment for those things. My family is being very supportive about it right now.
Title: Re: In a Crisis
Post by: Mimispree on March 12, 2015, 07:30:30 pm
Dear Milhaus:

I'm so happy you are getting all of the care you deserve.

Keep us posted.

Title: Re: In a Crisis
Post by: milhaus on April 28, 2015, 02:05:49 pm
Milhaus (Andrew)

I just read your post and had to comment on how much better you sound.  You really fought the good fight my friend.  It is wonderful to see how you now can pass along encouragement to someone else.  This is truly a wonderful place...especially when you can see someone uplifted by the support found here.  The ultimate recognitition of the success of this forum may never truly be known.  Just a word, or a cyber hug and some prayers can touch so many who never post.  The knowledge of people who have "walked the walk" and shared the hardships, means so much to all of us who travel this path.  With gratitude to all who have helped me and from whom I continue to draw encouragement, I extend very best wishes.  Andrew, keep on keeping on....good to hear from you.



I thought I might post a reply to your last post back in this thread so as not to distract from someone else's needs. I appreciate your comment, and I hope you are doing well also. I am feeling better. I am in physical therapy right now and trying to exercise everyday to combat my dizziness. Originally I just thought I was dizzy but that my balance wasn't too bad but I have discovered since going to PT that my balance is actually pretty bad...worse than I knew. This has really doubly motivated me to work harder at recovery. I am on medication which is helping with the depression. I also had another MRI which showed only the smallest traces of tumor remaining. My surgeons say I won't need another MRI for four years. It feels good not to have another surgery or more treatment hanging over my head.

I really don't feel like some shining success story, but at the same time I really wanted to offer that poster all the encouragement I could because I felt like I can really understand the position she is in. When I was filled with self doubt, totally stressed out, hopeless and lost, the thought that I had an acoustic neuroma had never occurred to me. Of course I had come across it in my research on causes of vertigo but I dismissed it as a possibility because it was so rare and a previous CAT scan had missed it (I didn't know a CAT scan wasn't an effective way to find an AN). I could have really used some encouragement during those times.

I am feeling a lot more positive about the future however. I have begun studying for the GRE, identified a program I want to attend, and am working on my health everyday. Physically and mentally I do feel better. I really do believe perseverance is key, and I won't give up. No matter how hard things hurt in the present, time can heal all wounds. Thank you to everyone who has offered me encouragement.

Title: Re: In a Crisis
Post by: NYLady on April 28, 2015, 02:37:46 pm
Oh Andrew!  Of course you are a success story.  Did you not say you are more positive about the future?  Continue to work hard, stay positive and GOOD THINGS will happen.  I will also be starting some VRT shortly and will think of how hard you are working at the same time.  I think we will both see some wonderful improvements.  You have motivation...and that is healthy.  You are willing to do the work and that hard work will also help with depression.  Nothing is worse than feeling you cannot do anything to change your many of us have felt that way at times.  Just keep going....Look forward to hearing about your continued progress. 

Title: Re: In a Crisis
Post by: milhaus on September 18, 2015, 01:49:02 am
A bit of an update, and some interesting new health findings. My tenuous optimism and improvements from before didn't last too long. I am still pretty much exactly where I was before, although my dizziness is a lot better. I still struggle with extreme fatigue, depression, concentration problems, and the like.

So I went to the doctor again begging for help. After running a load of tests, it turns out I have very low testosterone. I am only 25. Average levels for someone my age are over 600 ng/dl, and mine just two days ago was 180 and a few days before about 225 which qualifies me for hypogonadism. Further blood testing seems to indicate that the problem is with my hypothalamus or pituitary gland. It could be another tumor, or some type of damage. I am being referred to an endocrinologist.

This could certainly explain all of the symptoms I am having, and although it doesn't immediately seem like an AN issue, it might be related and my doctor said as much. My tumor was a pretty big one, and its positioning and growth had it really pushing towards the center of my brain pushing my brain stem completely to the side. The hypothalamus is somewhat close. Could the tumor have compressed it, or could it have been damaged during ~26 hours of brain surgery, or even afterward when my head was swollen to the size of a hot air balloon?

I don't know yet, but hopefully I will have answers soon. Has anyone ever heard of anything like this happening from translab before? They may be totally unrelated, however my lifelong string of health problems seems easier to swallow if they are related.  It will be at least a month before I can see an endo, and maybe sometime after that I can get on hormone replacement therapy and feel better.

Thanks for the support,

Title: Re: In a Crisis
Post by: Mimispree on November 14, 2015, 04:44:09 am
How are you doing?  I often think about you and I wonder how you're doing?

Be well,
Title: Re: In a Crisis
Post by: milhaus on December 16, 2015, 11:00:01 pm
I am starting to do better. I appreciate your concern Michelle, and apologize for taking so long to answer. It has been so long since anyone posted on this thread I stopped checking it. I quit my job and moved back to my hometown. I got a new job that is much better for my health situation working as a pharmacy technician for a local family who I have known for a long time. My parents bought a house for my wife and I to live in and I am saving money to eventually finish my education, or whatever I decide to do.

I am trying hard to just accept that it is OK that I haven't been to grad school yet. I am trying hard to accept my limitations and just allow myself to be OK with the idea that I may never accomplish all I had set out to do. I am trying to find a way to just be happy and just enjoy the rest of my life. It is hard because everyday I am faced with just how terrible I feel physicall, but at least here I have a lot more support. Life in my small hometown, close to family, is far less stressful than in the city. I just finally got my BAHA 5 programmed yesterday as well.

In conclusion, I am in a much better place than I was before.