Tell Me I'm Crazy

[nittiaj]

Hi everyone. I posted last week about my one year recovery and how successful the physical side of my recovery has been. I have also referenced, both in that post and in other posts, how difficult the psychological aspect of my recovery has been.

I have had severe anxiety for much of the past 10 months, and that anxiety has casued a number of physical symptoms (feeling drunk, temporalis pain, nerve pain in head and face, neck pain) that sent me into a panic about my aneurysm.

My panic got so bad that in February, after the nerve pain got very bad, I went to get a CTA. Everything was perfect. Absolutely prefect. The next week I got a great massage, and the nerve pain has been gone since.

Two weeks ago, during a very stressfull time for me, I left the gym one day and felt my left temporalis muscle (the one that was severed in the surgery) seize up. For the next week, each morning I would wake up with stiffness in the jaw and a sore temporalis muscle, which would go away in a couple of hours.

My problem is, pain can never just be pain to me now. Even though I know the temporalis is damaged in the surgery and is subject to strain when weight lifting, I let my mind wander and start to worry. But how can I worry when I had a perfect CTA less than 3 months ago! It's crazy to think that nothing went wrong with my aneurysm in the first nine months after surgery, but somehow things went bad since my test in February just because i have a little temple pain.

Its even crazier that I let the worry take over, to the point where I'm now getting tension headaches when I exercise, like someone is pressing down into my head from above. My scalp is sore as well.

I can't keep panicking like this, because I can't run off and get a test every month! My test was perfect in February, and at that point I said I can deal with any pain now that i know there is no problem with the annie. But clearly I'm incapable of doing so. Here I am panicking not three months later because of easily explainable temporalis pain.

How do I change this pattern of pain-panic behavior?

Lastly, I just realized I have PMs from some of you. I apologize for the delay, I didn't know they were there. I'll get back to you ASAP.

[sccandice]

I don't believe that you are crazy at all. I have been told that it takes 3 years to completely heal from a craniotomy but it is not easy to get those worry/panic feelings to stop. Everytime I feel some strange new feeling I tell my coworkers in case something happens to me. I just can't trust I am all right anymore. I feel like my body has betrayed me and I don't know if it will happen again. I have decided that I will have a CTA yearly until I am sure I am okay. I can keep telling myself that nothing extremely bad can happen in a year. If at any time I don't feel right or extremely bad, I will not hesitate to go to the emergency room. I think we know our bodies best and should not ignore something out of the ordinary. Giving myself that "okay" to to that when it is warranted has lessened my panic feelings. With our histories, I don't think it crazy or silly to question anything abnormal.

Having a normal CTA not long ago, at least you know that there is not a problem lying and waiting but I do think if you have any acute pain that is horrible or doesn't go away it should be checked out. I think for the rest of our lives we will always have these thoughts in the back of our minds. I hope some of the advice others can give you will help me too :D

[Kitty]

Nope, you're NOT crazy. :D
You seem to have gotten a little squirrel cage going in the back of your brain somewhere.:p I've had similar problems throughout this process of healing, and I also had a rupture, then another surgery. I got some relief from anti-depressants, but I don't want to spend the rest of my life on them.

I have gotten a lot of help from private counseling. Find someone who has worked with brain injured or stroke patients and has some background in the problems the brain can cause itself. I've been able to learn what triggers my bad feelings, or panic episodes, and also some coping strategies that work for me.

That massage you had sounds pretty good, right now;)

Here you are, still here, still active. Do try to live each day to the fullest!!:) And don't beat yourself up about feeling bad. It's not a contest or a race, it's another day of your life!! YIPPEE!!

[jacoco]

I have not yet had my aneurysm clipped(a week to go), but my husband had his heart valve replaced and an aortic aneurysm fixed a couple of years ago. He was highly in-tune with his body after surgery and went to see his doctor several times when he felt "weird." His doc was fabulous and listened and reassured him. After about a year he was comfortable that when he felt certain feelings it wasn't a sign of bad things to come. Now, after almost 2 years, he's at the gym working out with no fear. So it might help to know the fear is normal and give it some more time. Also, visit your doc if needed, just to be sure. You are NOT his/her first patient with this anxiety!
Gee, a massage...I might need to make sure there are some of those in my future!
jacoco

[beach1_gal@yahoo.com]

Hi,
I know all about anxiety and the fear of the unknown in a sense. I have 2 annie's they have found and tomorrow I see the 2nd surgeon to discuss him clipping the one and the other surgeon I saw will be coiling my other one. I have had headaches for 3 weeks now and went to the E.R. for one headache because I thought for sure one of them had ruptured. It didn't and they gave me pain and anxiety meds and I slept in the E.R. for a few hours and when I woke up the doc that saw me came in and talked with me about this whole process we go through.

He assured me that if I ever don't feel right to head to the E.R. and they will never look at you like you are crazy YOU are the one that know's what is right and wrong feeling in your body. Just remember that! They don't have these little time bombs in their heads we do, clipped or coiled the fear is normal and scary.

I finally went to see a psych doctor who was wonderful and said the headaches that I am having even though the NS said they aren't from the annie's I believe it so my brain does too. He put me on Klonopin it's like (valium or xanax or ativan) and let's me take up to 5 mg a day when needed (mind you not all at the same time). So I know you don't want to be labeled by seeing a psych doc but you wont be and it can help with the fear and panic.

As for the pain that is my biggest fear as I am afraid that they will think I am an addict or something put the pain is there and never was until after the annie's were found.

So please hang in there and talk with the doctor's even your private one maybe they can help and give you something for the anxiety and you wont have to see a psych doc.

Just remember if you are really scared and feel wrong don't walk run to the nearest E.R. it's better to be checked and be ok then to stay home and do nothing and go crazy with fear. If you want more in depth conversations that I have had with my doc's just pm me and I will fill you in on all I have had to go through and still am. I mean heck tomorrow morning I see then next doc and I'm scared that they are going to take too long to get the procedures done! But I deep breath take my meds and calm down with a favorite movie (drives my roommate nuts to hear the same movie night after night but I told him to shut his door and get ear plugs!! LOL

Just remember we are here for you and you really are not going crazy you just need to get to the doctor and let him or her know what you are going through so they can help you the best they can. And if you don't like them find another one til you find one that is understanding of what you are going through.

Love and Prayers,
LaDawn

[shygirl268]

Nittiaj, its so easy to doubt and loose faith in ourselves when we feel so vulnerable. Although I feel i'm physically on the mend I know my confidence has taken a huge knock and it will take time for me to gain my strength emotionally. I think Kitty offered you some excellent advice and I would have to agree with her. Perhaps find yourself a good councellor, maybe on recommendation? Medications are fine but I think only in the short term and they dont' deal with the root cause of the issue, they just deal with the symptoms. A good therapy will help you look at your fears, accept them, and find a way that is right for you to deal with them. Have a look at NLP therapy? Lots of love to you, and keep posting here, you will find lots of support from your friends here. Julie XX

[Beachgirl]

Hi Nittiaj,
I agree with both Kitty and Shygirl about getting some counselling. Learning some tools to help you to cope with and manage the anxiety you are experiencing could be really helpful. NLP therapy is great, as is CBT (Cognitive Behaviour Therapy). One that I find especially good is ACT (Acceptance Commitment Therapy). Also meditation has been a godsend for me in managing anxiety and the physical symptoms that often go along with this.
Could you ring your NS and talk through the pains you are experiencing, even if it is just to confirm that there really is nothing weird going on - it is better to err on the side of safety.
My heart goes out to you as I can completely understand the debilitating effects that anxiety can create, but it IS managable and beatable (is this even a word?).

Hugs,

Nat xx

[nittiaj]

Thanks everyone. The most frustrating part is, after my clean CTA in February and getting past the nerve pain in March through massage, I felt 100% completely normal for most of April. In a way, having that feeling of normalcy made things worse when the anxiety symptoms came back just because I thought I had beat it.

I don't call my NS because I try to avoid questions I already know the answer to. He's going to say "you've been lifting weights and now you have pain in your incision area? OF COURSE YOU DO! The muscle has been severed and will never be the same. It reacts to physical stress." Then he'll tell me, "you had a clean test 10 weeks ago. WHat more can I do for you?"

And that's the point. The only way I got through my previous bouts with anxiety symptoms were clean tests (MRA in Nov and CTA in Feb) I can't run off and have a test every month. Why can't I just accept that clearly, with a clean CTA in Feb, everything is fine from an aneurysm perspective, so whatever pain I'm dealing with is meaningless. And it's not even a bad pain, I promise you. But the point is ANY pain above the neck now makes me panic, which in turn creates more physical stress symptoms, which only makes me panic more, etc...And this time, there's no test to take to push me through.

[ljt764]

I would think that if your doctor is telling you "you had a clean test 10 weeks ago. What more can I do for you?" that I might consider getting another doctor....anyone who doesn't think that your symptoms (and the stress that they cause) isn't serious enough to take five minutes to reassure you you will be okay just wouldn't be the best choice for me. I would find someone that took my concerns more seriously. Counseling would help you, and maybe some anti-anxiety meds will also give you the assurance you need. Best of luck!

[janeh]

I personally think going through this situation is really difficult. I think that healing happens but there is also a feeling of post traumatic stress that happens as well to many. Depression and anxiety are normal for many. In so much of this we have support, yet we (I) am alone. Finding this forum and others like me was and is such a gift. So many medical things happened and have continued to happen, it gets hard to twist and duck, and put up a fight.

The best thing for me has been therapy, a safe place to talk about all of this, and also when i needed antidepressants, and anxiety meds have all helped. None are forever. I am 8 months post op clipping, non rupture, and sill dealing with what all went down within such a short amount of time.

Maybe looking into some therapy would benifit you. I have had several CTA since clipping, and as my dr. dude says all looks good. My aneurysm is over. I have to trust him. However i still deal with other medical issues , mini strokes, and they scare me to death, but i acknowledge the thought and then move on. I have stopped burrying myself as well. I actually think about living. So slowely i am getting better.......this has all been a process for me.
I wish you the best.
j

[TropicalTrish]

Hi Nittiaj,

Like Jane and the others have said above - it's quite normal to stress over the event after we are clipped or coiled. You think we'd all be just so relieved it's all over and cured that we would just do happy dances every day!

Nope ~ it's like a sore tooth ~ our darn tongues gotta keep playing with it. Sort of a self punishment almost!:cool:

But at some point - it ceases to be the MAIN thing in our life. I think time alone helps heal the stress factor - then life starts throwing other challenges at us anyhow.

I now have a thyroid challenge - to heck with the brain thingy :) So I am off pursuing the healing or resolution of that.

I also have to do my Income Tax! Accck ~ that'll take my mind off everything!!!!;)

Then there's this and that ....and you know ~ Life just goes on with challenge after challenge after challenge which most if not ALL of us face constantly.

Who has a stress free life? I mean if my neck isn't sore then instead I have a family problem and if my wrist isn't sore then I have a work problem.

Of course it's important to listen to your body at ALL times and maybe because I have been thru a brain procedure I listen a wee bit more carefully but I also realize that my body is talking to me ALL the time ~ and it's damn noisy and annoying at times ~ I just didn't use to listen as hard!!!

Now I stop and listen then if it's just a headache or a knee ache or something that doesn't last more then 3 days - it's just part of life.

I'd rather be listening to some good tunes than all the creaks and zings and aches and pains in my body! :) I acknowledge them then I move on.

I kind of trust my body to REALLY get my attention when it needs to.:eek:

Perhaps with you working out which is for sure healthy you just hear every pain above the neck and panic more. (feeling drunk, temporalis pain, nerve pain in head and face, neck pain)

Hmmmmm....I think I would be after knowledge first ...as in why those pains keep happening and then want to get treatment for them meaning perhaps pain massage or other treatments that show you the pain CAN be taken away physically so therefor you have to mentally let those pains not panic you either.

Sort of a reverse cycle ~ You are causing the pains therefore you are causing the pains.

Now that sounds confusing I know.:confused:

I think you have a 2 part thing going on that you must treat in different ways.

Counseling for the mind with like minded company or one on one - and physical relief for the pains created when working out.

And don't be SO hard on yourself either! It's ok to have some concern but it's not ok to be SO worried you get immobilized or panicked!

Find out if the pains are to be expected then find ways to deal with the pain when it happens.

There is some super good advice posted in your replys ~ and I would be very interested to see how you are doing after trying some of this.

I think it's amazing you are working out so hard after a clipping and think it's fantastic really. You could post advice on here about excercise and probably help some of us out!

Please let us know and know you are not alone! My best thoughts to you!

[nittiaj]

thanks everybody. I know this sounds like a cop-out, but when I don't have any physicaly symptoms above the neck, I forget about the aneurysm pretty quick. But as soon as any sypmtoms arise, I let it run away from me and start panicking even though I've had two clean MRAs and a clean CTA.

I understand that most of my physical symptoms have come from stress, but this temporalis pain is different. I think this is my first physical symptom: I think I strained the muscle that is damaged in all of us with a clipping. Once that pain starts, I start letting bad thoughts take over. Even though the pain is clearly being felt outside the skull, I can covince myself that it's inside the brain. I have to remind myself that things typically don't go wrong with a clip, particularly when you just had it checked out three months ago.