I’m to the point now where I don’t know what to do, or where to turn. The only thing that somewhat helps me is sitting in a room, by myself, completely sheltered from everything and everyone else. In July of last year I had an aneurysm rupture. At the hospital is when they also found my AVM. The next day they coiled the aneurysm. In August they did the embolization and inserted glue into the AVM. In November, they did the craniotomy and removed the AVM, and also clamped 2 more aneurysms that they didn’t see before because they were behind the AVM. During the craniotomy another neurosurgeon was called in to expand my blood vessels because I was still the verge of having a stroke. Other than that, and a blood transfusion, everything went great. My incision has healed wonderfully and you can’t even tell where the surgery was done, or that I even had it. 4 months later, in March, I had 3 back to back seizures. I was really angry about something and completely flipped out. The seizures followed that. I was on Keppra at the time, and a month later in April, they took me off of it because they thought the anger spells were coming from that. They then put me on Vimpat, after I was admitted again in April for seizures again. This time the seizures happened in the middle of church service. The loud music and singing was making my hands tremor, and I left the sanctuary and sat out in the foyer until the singing was over. Engine I came back and dat down, I was tremors nag even more, and went straight into seizures. They started the 5 day EEG in the hospital and when 3 days went by and I didn’t have any seizure activity, they sent me home. Everything was great until this past Sunday, when at church, I had seizures again. I had 2 seizures the night before too. They increased my Vimpat, and sent me home after 2 days because I wasn’t showing any seizure activity on this EEG either. I brought up to the neurologists that everytime since March that I have been admitted! I am on my menstrual cycle and that I had read about catamenial seizures. They have talked about just going ahead and admitting me in June around that time to see if they could capture a seizure. But, what they don’t understand is that everytime a seizure happens, my anxiety feels sky high. Going down the road I’m freaking out about all the other vehicles. In stores I feel like something is going to happen and I’m constantly looking at everyone else around me. No matter where we are, if there are too many different noises or people talking at once I can feel my chest tightening up. My body will feel like it’s on fire in the inside and I just want to scream. I’ll start panicking on the inside, my head will be running a million thoughts at once, then I start shaking and crying. My neurologist won’t diagnose if it is anxiety or not, and tells me I need to see a psychiatrist. Before all of this has happened with my aneurysms and AVM, in 2006, my husband was blown up by an IED in Irsq, and I had always taken care of him. His PTSD symptoms are very common to what I feel I’m experiencing too, but I’m just so lost and so confused. Has anyone else had anything like this too??
Dear Girl, I know exactly what you are going through...anxiety, stress, loud noises..being around too many people. My journey started in 2007 and what I can say...things will get better. Keppra has worked for me, but it does not for many people.
Do you have a neuro-epilepsy doctor AND if you decide to see a psyc...please find a neuro-psychiatrist.
I have asked you to be my friend...Please know I'm here to support you and if you have any questions, please feel free.
PS...I know am living with my daughter and her 3 babies... a 3 year old and twin 1 year olds...and I feel blessed that, although it took time..I am helping her raise these babies.I do have a neuro-epilepsy doctor. She’s one of the best around my area, so I feel good about that. For my crainy to be this past November and all of this didn’t start until March, is that normal? I would have expected to start having problems closer to when the AVM was removed, not 4 months later. With 3 young kids, I can’t just sit in my room all day with lights and the tv off and my face sobbing into the pillows. I’ve never felt like I wanted to just give up more than what I do now.
It has been very soon since your cran... Healing from brain surgery takes more time than for any other surgery.
Is there any way you can apply for help with the kids, because you really need more support because of all you are going through.
Would it be possible for you to ask for help from the people you go to Church with? If they could team up and help you that would help you heal.
As for the symptoms starting 4 months later, I've never heard that before, but anything is possible.
Again, I'm here for you!
Hi...Please go on the Resources site listed up on the right side. I hope there is some useful information there.
There is more information that may be helpful....Member Services...again at the top of the site.
wifey, please call the hotline at 1 800 274 talk. Or, if your anxiety is high enough, head to the ER and get them to help you. Things will not always feel the way they do today. You will get better. But when you are in this much distress, you need to have a real person helping you, not just an online support group.
Wifey, there is an Adult Services webpage for Davidson County, NC: http://www.co.davidson.nc.us/DSS/AdultServicesOverview.aspx
Please phone the number on the page and explain your situation, to see if you can get some assistance. And, I made an error earlier on the crisis number. It is 273-Talk, not 274.
Here is a resource just for veterans in NC: http://www.veteransfocus.org/servicemembers-veterans-and-families/
I'm so sorry I haven're responded before now. I wasn't on the site at all. I have many of the same difficulties you do. Riding in cars scares the heck out of me. Loud noises and too much activity are very hard. Like Louisa said, it is still relatively soon from your procedures. I just celebrated my six year anniversary last week. I don't have seizures but I know what you're going through. I can promise you it will get better. It takes time for your brain to heal. While you may always have seizures, once your doctors find the best medication, they are managable. I do hope you take dancermoms advice and find someone near you to talk to. Anxiety if quite common following an injury to your brain. Talking to someone really helps. Also there are medications the can help with that too. You need not feel alone. We are all here for you. While I'm not terribly close to you, I am in NC also. Near Raleigh. If you'd like, send me a friend request. I can send you a private message and give you my personal email and phone number. You can call me if you'd like. My husband is a veteran also. (Army however not USMC).He was not injured thankfully. I cannot imagine how difficult that must be for you and your husband. I do understand military life though and have the utmost respect for our service people, past and present. Let me know if I can help in any way.
Sorry to hear this Usmcwifey010...I can relate to your post as i do suffer from a lot of anxiety also and since my AVM removal it has got worse in the last few years...what i try to tell myself is that God gave me a second chance in life and we are lucky to be here today...so i try to stay positive for my family and myself and fight my anxiety issues as best as i can...If we can survive brain surgery then i know we can push past anxiety and other factors in life.
Everyone is different when it comes to healing physically & mentally...so be patient, positive and strong knowing you are not alone and help is there...God bless
I would not be at all surprised if your hormones do play havoc with your brain. My sister never had a migraine in her life until she went thru menopause. Her doctor had her track her migraines. Guess what…they occurred on a 28 day cycle! Hmmmmm. So she traded menstrual cramps for a major headache every month.
BTW…I find most members here do better with a neuropsychologist someone who specializes in TBIs rather than a psychiatrist.
You asked why did the seizures start after 3 or 4 months? I know people on here who had their seizures start 5 years after their craniotomies!
Basically you lost a knife fight to the brain last Nov. So really you are only about 6 months into your recovery. As depressing as this may seem…you are still in the early days of recovery yet.
I do not buy into the theory that you should be completely recovered within a year. Too many members including myself found improvements years after our craniotomies.
I did a search on here for you…http://www.avmsurvivors.org/main/search/search?q=Loud+noises
You are not alone!