Just dropping in to ask a few questions. I'm new to the site but have found a lot of great info posted here. I'm wondering if anyone has the following issues; head pressure from time to time, the feeling that you're trying to fight off something, like a cold or flu, I guess just overall yuk feeling. I had a ruptured Anne in Dec 2010 and on my follow up the Dr. said to resume all normal activities but I just can't seem to get back to where I was prior as far as energy is concerned. I think that maybe I just end up wearing myself out and then I end up with the above feelings. Anyone want to comment on this. I'd really like to go to work but don't feel that I'm ready if this is going to keep happening.
Your age really doesn't make a difference because the annie doesn't seem to care...you will see many people here all of different ages...
You came to a great place for help...
I was coiled in November of 2010...I donot work outside of the house ... so I can't answer the work question...I must tell you...it has been 6 months...and I still experience headaches and soreness, etc., and if something bothers me greatly...I don't do it...and then I try again at a later date...This is a long journey...and the brain seems to tell us what works and what doesn't...you will find that tired ... is a big part ... it is what we call around here...the "new normal"...for me ... I was a very outgoing person...now I have trouble with loud noises or crowds...yup...the new normal...the Doctor's don't seem to be on top of it...because unless you experience having an aneurysm...it seems one doesn't understand...work towards doing daily things...but when your body tells you otherwise, rest...
From one survivor to another...Gotcha in my thoughts...Colleen
thanks for the info. I haven’t actuallly worked for about 10 years but may have the opportunity to go back. Not sure about that though, as far as the noise and crowds are concerned, I just experienced that a few weeks ago, didn’t care for it either. I’m tired and trying to catch up on sleep doesn’t seem to help. I also have a wait and see anne but it’s very small, don’t think that it is the prob. Like you said, likely just need to rest and rest and rest. In time all will be well, I pray.
Thanks Jim, I guess I’m learning that, it’s frustrating though because you want to be what you “used to be” and I don’t think that will ever be. So when they say about returning to normal what they really mean is the “new” normal that you are going to spend time finding.
I had my aneurysm clipped in September 2009. For a few months after the surgery I had exactly the same symptoms you are describing. The biggest one was my energy level. I started getting pressure and some swelling on the side of my face where the surgery had been done. I had a second craniotomy in December 2009 and my neurosurgeon discovered an infection from the surgery.
I had to have the bone flap removed while I was treated with IV antibiotics for 7 weeks. They replaced the bone flap with a synthetic one and I am doing fine now.
Please be sure to follow up with your neurosurgeon if you continue to feel this way. You know when something just doesn't feel right.
Thanks for the input Wendy, not sure that it’s an infection as I’ve just encountered these symptoms. I will definitely keep an eye on it though. I had quite a bit of stress last week and really believe that this is what wore me out the most and created these symptoms. It’s taken me pretty much all week to recover but feeling better today. Went for a walk with my hubby last night and just getting out made a difference. Will continue to post though. Thanks again.
Hi Jim: The one thing that I can't do easily anymore is whistle. I used to love to whistle, not good at it, but now my mouth seems to be dry most of the time and I have to wet it before I can concentrate enough to whistle. Bummer. Oh well if that's the only mechanical thing I've lost then I'll be ok. I'm feeling better today, went walking with my husband last night and that seemed to make a difference. I always feel better when we are together anyway. He is my pillar of strength and he continues to support me in every way he possibly can. I get concerned that I may be a burden but he dispells that immediately and reassures me that he's just grateful that I'm still here.
I agree with you on the happiness part of things. I try and keep a positive/humorous outlook on things. I, according to my husband, have become more patient with things/people. There are still times when I get irritated but calm very quickly. I will continue to seek the new me but perhaps at a slower pace. Everything takes time and everything in it's time. Thanks Jim, I'll keep you posted.
Teddy....welcome...I have head pressure a lot...not a headache (throbbing) that many mention. ..It is difficult for me to arise from sleep...and, when I first lie down... i.e. what I (personal opinion) believe is variance in blood flow...
Yes, when I turn my head a fraction (especially when lying down) I feel like I am coming down with an ear ache...and more... And, when seeing a neuro-whatever, it is considered pretentious...
Hope you can continue to get responses here..and, possibly helpful when you return to an md..
Please do not let my negativity turn you away from here...mopst are so helpful...so positive....
Hi Teddy, I had my anne in 9-2010, & still have the same symtoms as you. Alot of pressure on my side where the anne was. Always feel tired & no energy. I used to love to cook now thats the hardest thing for me to do. I can't concentrate long enough to do it. I've cook for 50 years, & now its like learning all over again. Still experience the headaches, frustration & depression. Hope someday it will get better. I just told my husband this morning that I wish just once that I could wake up feeling good. Problem is that I look the same, but I don't feel the same or act the same. No one seems to understand. What I try to do is take one day @a time & try to keep the faith.
Thank you Aggie for your input, this pressure thing just sort of started with me. Had some before but nothing that lingered. Lisa says she feels it most when it’s going to rain and it’s been threatening off and on all week but not much precipatation yet. It’ll be interesting to see if when it does finally rain for a few days if it makes a difference. I’m hoping since my stress level is back to normal that the pressure will settle down as well. It’s not painful, just annoying and scary. I don’t feel like me either, and also I used to love to cook as well but lately seems more like a chore/duty than the pleasure I used to get from doing it. Lets hope that our culinary ambitions return otherwise our family may stroke us off their Christmas lists. I to am taking one day at a time and discovering the new me, not sure I like her yet but time will tell. I have strengthened my faith as it’s the only one thing that is never changing. My husband and family continue to support this new person and encourage me every step of the way. My husband is constantly doing research on the annies and passes the info onto me or just uses it himself for support. Hope to talk to you again soon, and again thanks.
Hi…I’m new to this site. I passed the 2-year “recovery” period for my aneurysm hemorrhage/coiling on Dec. 1 of 2010 Now that I figure I’ve recovered about as much as I’m going to, it’s hard to fight off the depression. I’ve had the “pressure thing” as my constant companion since the aneurysm. So I guess it’s at least comforting to hear that many survivors have the same “pressure” (burning?) feeling–sometimes I’ve thought I’m losing my mind or something! I DO feel like I’m having to accept a new normal. I have tried to go back to piano teaching, but I find that I am now so chemically sensitive that I can’t sit next to students wearing so much as fragranced fabric softener on their clothing. Any fragrance or chemical exposure triggers nearly immediate migraines and stomach cramps. I also cannot tolerate loud noises and crowds, so have had to give up participating in my church’s worship team…I can’t seem to tolerate any amplified sound for any length of time, so that makes rehearsals nearly impossible in this day of amplified instrumentation. I had an angiogram a couple months ago to check the coil and was so sick for several weeks afterward (migraines and even increased sensitivity to chemicals and fragrances) I am wondering if the procedure worsened my multiple chemical sensitivities by flooding my entire circulatory system with a dye that my brain doesn’t like. I feel real presssure to be working because of family finances, so the stress is overwhelming at times. I am also normally a very social, involved person, so it’s hard to adjust to who I am now. Even being on the computer or phone for more than a few minutes at a time starts making me yucky. I will check in here as I am able. It’s nice to read all your posts!!!
Hello Sandra...and Welcome...amazing...I could have written this post myself...this is so me...infact, I go next month for my 1st 6mos angio since coiling...but when you put burning...I tell my husband this all the time...about the burning in my head...it is so good to know we all experience the same things...however, I wish the neurosurgeons would realize these things too...
Have a nice day...from one survivor to another...Colleen
Thank you so much, Jim, for your words of encouragement. There are honestly so many times when I wish I had not survived. That’s just me being honest. You give me some hope that things may continue to get better.
Sandra, Amazing how everyone has the same feelings. I had a ruptured annie w/ 26 coils, 71/2 months ago. Seems like everyday is the same. How I would love to wake up one morning & say that i feel great. I have tried to go to church for the last 3 weeks & its always the same. I feel like everyone is talking at once, people are crowding in on me, can't sing anymore & the singing bothers me. I loved going to church & other places, but I don't anymore. Been trying to work but only manage about 3 hours & then I'm finished. I sometimes feel the same way you do as wishing I hadn't survived, but then my grandchildren show up. That changes me. Try to hang in there & remember your not alone.
Hi Teddy. Welcome to the exclusive club that you have to have a brain bleed to join!
Your feelings are totally normal. I had my rupture over 10 years ago and I have to say the first year was the hardest. Even after I was released to go back to work, that's about all I could do without feeling totally drained by the end of the day. My fatigue lasted for months. Headaches occurred at about the 6-month point and scared me so bad I made an appt. with a neurologist. She examined me and told me that my headaches had nothing to do with my bleed and surgery. She suggested that maybe I was stressed out and she was right. I took a few days off and felt much better. What you have to remember is that your body has been through a tremendous trauma. It takes a long time to recover from something as huge as this. Give yourself time and give in to the fatigue when you need to. You've experienced something that many around you might not understand so you're going to have to be your own advocate. It took me at least a year to feel 'normal.' And I can say that now, man years later, I feel totally normal. (Although I still blamed the weight I gained during that period on my fatigue — but it's become a pretty lousy excuse since it's been 10 years!).
And, I can't whistle either — but that's because I have braces. Yup. 57 years old and I have braces. What was I thinking ...
Hi Teddy I had a ruptured annie on May 169 2011, At the drs visit I found out I have 2 more he said I am going
to need clipping. I have been out of work since May. I have to go back next week otherwise I will lose my health ins thru my job they want me to buy cobra but its so expensive. I have no choice but to go back to work. I still get pain I always feel pressure on my head. But I am gonna try I guess one day you wake up and say to yourself this is the day. I have to go back for clipping in Oct. so this is why i need my health ins. I don't know of any agency to seek help with. I have so many medical bills what to do?
HI Pat: I'm attempting to get a referral to a headache neurologist for the pressure/throbbing, extreme temple and eye pain. From what I'm reading on this site, perhaps I'll be wasting my time? My saying when it comes to seeing a doctor for anything is... unless you have a bone sticking out of your skin with blood dripping off of it, they probably won't listen or help you... So I don't go to doctors unless I absolutely have to. In the 11 years that I've had these headaches, I've tried every other modality out there to help but nothing has except one time: a physical therapist told me i had a pinch in my neck that didn't allow the blood to drain from my head (hence the pressure and throbbing). He did some very minor adjustment and wow, it worked! I could put my head flat on my bed/pillow without extreme pressure and my headaches improved for a while. My cranial/sacral osteopath doesn't even know what he did and can't replicate it so the pressure continues.
I guess I'm wondering what the docs say to you when you talk to them about this? Maybe I won't bother???
Hi Teddy wellcome from an Italian survivor.
I had my rupture in February 2009, first coils and in January 2010 I got a pipeline embolizatiom flow diverter stent in the artery near the Annie.
What you feel in my understanding has only one name : fear.
I felt with the same several months, stlll today sometimes.
Try to coming back to your previous life day by day, it will takes time; the recovery is quite a long and intensive story.
I remember I was/ I’m fully concentrated to live day by day to manage my fear.
Take care Of you and let me know if you need more information.
Giovanni
Hi Teddy...and update on my endoscopy ... I have a narrowed esophagus ... so they stretched it...hoping this will help with the swallowing and choking... they biopsied inflammation in my intestine (they will call in a few days with results_...donot think cancerous, but a bacteria causing some problems...I didn't feel good a few days because of stretching, but now ok...and me thinks me can feel a difference...I feel like the back of my throat isn't closed...now...
My Cat jack died this weekend...it was hard...he was special to me...I still have my female cat Maddie and my dog Peanut...but my animals are like kids to me...and I feel like I have a broken~heart...
Time...will heal...like everything...huh?
How r things going for you? Cyber~thoughts and prayers to you ... Colleen