I have been hit with really bad fatigue latley and as soon as I wake up in the morning its a struggle to get out of bed! It's feels the same as when you go down with a flu virus and you feel enormously tired and just want to cuddle up under the duvet! I still have the dizziness too.
Its been almost 8 months now since I had my surgery and I will always be eternally grateful that my aneurysm didnt burst and they were able to treat me, but I just wish I hadn't been told beforehand, that two weeks after my surgey I would be recovered!! My husband keeps saying" Its been 8 months". Everyone tells me how well I look and this makes me feel like a fraud! I mentioned I get really bad dizziness to one person I know and they said to me they get dizzy spells too, but still drive and do things and I was made to feel like what I have had was nothing!! I still cant bend without having this pressure sensation in my head. I also get odd pains in my hairline the same side of my head where I had the coils placed and when I am in bed I get these twinges in my head, the same side as the coils are placed! I thought maybe they had shifted about but my MRA shows they are still there and in the correct place.
I'm still having problems with my circulation and I get tingling in my toes or leg and sometimes both, since having my surgery. Sometimes my arm feels like my sleeve is wet! This only affects my right side so I am wondering if its nerve damage because they entered the artery in my groin.
I am travelling to London again on the 10th of February to see a nuerolgist. Here, the consultants cant agree on whats happened to me. I have been told the stroke like syptoms I have suffered since having my surgery, were possibly due to vasospasm, TIA, seizure, small blood clots breaking off from around the coils, or focal migraine!! Also, small vessel disease in my brain, caused by the ageing process! I'm not that old! I just want reasurrence really. I'm afraid of having a stroke and although my blood pressure is really low,I have had an ischemic stroke when I was quite young. Again,no one knows why this happened.
I am really hoping my energy levels will return soon.
Hi Eve...This is the most frustrating part...like one should look awful ... and this equals sick ... I was raised that one didn't go even to the grocery store without makeup...so there you go...look good and put together, but sometimes feel like I am walking in quicksand. I am blessed that my husband understands...Bless his heart he has had a lot on his plate due to my ill health through the years...but I found if friends and family do this to me...I distance myself...I need to feel good about me...and I am accepting...that I have bad days and good days...and if they can't, well you know...they can just go to ... oops...Anyways, it is important that you take care of you and explain to your husband your feelings...you still have a lot on your plate...and I am wishing you well with the neurologist...I think Tired is part of this journey...and it does get better...but the first year for me was absolute exhaustion...so keep that in mind...~ Gotcha in my Thoughts ~ Colleen
Hello Eve. I'm still getting fatigue at 2 years. I too was told I'd be fine in 2 weeks. I'm learning to live with it, but I've been forced into retirement. The local 'Acquired Brain Injury Service' neuropsychologist has been quite helpful with advice on how to pace myself. Tell the neurologist about your sensory symptoms, I'm wondering if they indicate migraine auras or a type of seizure.
We have an invisible disability, look normal sound normal. I find I need to remind people frequently that my brain no longer works as efficiently and they need to be patient with me. I hope your London trip goes well. Are you going to Queen's Square?
Just jumping in to show my support - I agree 100% that the recovery time certainly isn't what's listed in the pamphlet so to speak! I'm nearly two years out, and I have adapted and decided that "normal" isn't going to happen. So, I just deal with my new normal and whatever I need to do to keep moving forward is what's now normal. Exhaustion? Take a nap. Go to bed earlier. Whatever it takes! Maybe tomorrow will be better. I totally agree also that it feels so awkward to look fine, but not feel fine, and that people around me just don't get it when I try to explain. So be it. I am who I am, and I don't need anyone else's blessing but God's for that. You are not alone, and thanks for sharing because it reminds me that others feel what I feel and that validates my feelings, something that non-survivors just can't quite do.
Did you get your thyroid levels checked? When mine were low I just couldn't drag myself out of bed even though I had always been an early riser.
Careful! I am now 13yrs out after 6cm rupture. 95% recovered. No one can tell unless I tel them. I say careful because 2yrs after mine I contracted mono and didn’t realize it. I thought I was being weak and kept pushing myself. I regressed some in process of pushing myself.
It’s okay to stop and take care of you!
As I say to my teenage kids "time for me to marinate in the tub."
It works wonders! Good book,soft music, and calm waters. Awesome combination for recovering energy.
Blessings!! Let us know how it goes!
Hi Colleen, I am so sorry I am so late in replying! Things have been hectic here at home to say the least! I have such difficulty sleeping, despite being really tired and I cant get a regular sleep pattern anymore. I have been having really bad blurred vision, mainly affecting my left eye. I still have not received my ophthalmology appointment. I received a letter saying I was on the waiting list and rang to discover my referral had only been made at the end of January! I was referred last June, after I was admitted to Hospital with severe visual disturbances and a severe headache, following my surgery. I have rang the neurosurgeon secretary several times, she told me the neurosurgeon had expedited my referral and this was back in late October or November. This week when I rang, she told me she was having the registrar expedite my referral as the neurosurgeon was on holiday! Hope all is well with you.
Hi Judith, Its been almost nine months since my surgery and I feel I still have a long way to go until I get back to normal. I haven't seen a neuropsychologist. Can I ask to be referred? My appointment at London got cancelled! I am going this Monday. Yes, it is at Queens square. Is that where you go? I have to pay as I am not living in the area. I hope I get some reassurance. The trip alone will wear me out. Its almost a 6 hour round trip by train and I have such bad fatigue I am really not looking forward to traveling.
Hi Sarah, Thanks for the support. Its so good to come here because no one else understands! The neurosurgeons seem to think we are all fine in two weeks! Doctors rarely see patients with aneurysms, so they don't know how we feel. I was the first in my doctors surgery to be diagnosed! People keep saying I look well but they have no idea how I struggle throughout the day or how I feel inside. I feel like I am in slow motion and I still have problems with my short term memory. I say inappropriate words at times during a conversation. I had a workman here a week ago and in conversation with him, it happened and I felt a fool! I struggle to be able to take in any new information too and I have to write everything down from appointments to a loaf of bread I need to buy. My words stick sometimes and I repeat the same word over and over and then my conversation flows ok again. I get really embarrassed and feel strangers must think I'm odd.
Hi Jennifer, how are you doing? I'm sorry its been a while. Things have been very difficult here. I did have blood tests and my thyroids are all ok so that's good news, but I'm still suffering with this awful fatigue and blurred vision. I wish I could get into a good sleeping pattern. I tend to wake up throughout the night and cant get back to sleep for ages afterwards. When I have a headache, I get a bit panicky thinking about the coils in my brain, but other than that I just don't think about them being there. I notice the cold weather affects my head since having my surgery, do you find that? I have a new appointment in London on Monday, as the clinic was cancelled on the 10th. I'm hoping I will get some reassurance regarding my list of symptoms!!
Hi Marianne, I do tend to push myself and with taking care of my son it is difficult to be able to switch off. I do feel some days that I am going to collapse. I am taking Solgar multi vitamins but I have no energy. I just seem to take so long to get things done around the house! I can't get through it all anymore. I buy magazines but I don't have time to read them. When I get to bed I fall asleep, then wake up after an hour and take ages to get back to sleep again. I just feel constantly tired,just like you feel when you are going down with a virus.
I hope your London trip goes well. I've had my neurosurgical care at Southampton, but Queen's Square has long been THE place in the UK for neurological disease. I hope you get answers to many of your questions. Of course there are still many unknowns about the brain and how and why it behaves the way it does, so there may not yet be explanations for everything. As scanning and knowledge improves I guess some of those unanswerables will be explained.
I've seen the neuropsychologist from our local service called the Acquired Brain Injury Service. It is part of the Community Trust rehabilitation team. Googling for Cardiff I think yours may be part of the mental health team. See here under neuropsychiatry services http://www.cardiffandvaleuhb.wales.nhs.uk/mental-health-services. Your GP should know where to send you locally and able to refer you.
You may be able to get advice from Headway Cardiff http://www.headwaycardiff.org/
I hope the journey goes smoothly. I suggest resting on the train (with out reading etc.) and if you take someone with you let them do the navigating round the tube system and the map reading (or get a cab). I know that fatigue. Let us know how it goes.
Hi Judith, while I was on the train yesterday I couldn't find my original post. I am useless on my phone!The vision has gone in my left eye now and after yesterdays trip I am so worn out, I think it will take me a week to recover!The neuro there is arranging for a pituitary specialist to check over my last two scans, so I should know more soon. No answers as to why I have these odd symptoms yet because he has never heard of what I experienced after my surgery, happening to anyone else! So maybe its a combination of my surgery and my pituitary.
Thanks for the links Judith. I will be seeing my GP next week for my blood results so I will ask for a referral. I cant function some days because the fatigue is overwhelming.
I'm really struggling since Mondays journey to London! I have not been outside since! Just as well really because if someone told me I looked well, I don't think they would appreciate my reply!!!I have no energy whatsoever. I did this same trip several times to the Hospital, before my surgery and would feel tired afterwards, but nothing like I feel since having my surgery. My left toes have been tingling for the past two or is three days and last night, my left cheek was tingling. I feel like I am 100 years old both mentally and physically and I could sleep for a week. I'm wondering if these symptoms are due to over doing it on Monday? My headache was so bad this morning. I'm now taking Tramadol.
So sorry to hear, but at least you’re going to see a specialist that might answer all your questions, right? I’m interested to hear how that goes - please post whatever news you receive! Rest up as much as possible until then - rest always helps.
I've found if I have a very busy day I am often under the weather for several days. Hope you feel better soon. Judith
Hi Eve. I had aSAH, and like many of you im learning to deal with some problems. Some days im not tired, others I go home from work, take a nap or go to bed early. For me, when im under stress [and who isnt] my problems are magnified. I have a small problem with speech since the SAH. When im tired, stressed, or emotional, I have to slow down, and in my mind I think what I want to say. Only my wife and good friends notice this. Dont get discouraged. Do the the best that you're able to do. Things will get better
I still haven't heard anything from London yet. The neurologist said he was going to have a pituitary specialist there, to check my scans but it will be two weeks this coming Monday that I went and still no news!
Still really tired.
Thanks. The traveling really affected me this time. I do find also, that I get tired more easily just doing day to day things since my surgery. I wish this pressure would go away in my head when I bend.
I am finding the fatigue really difficult to deal. I can take painkillers for the headaches but nothing for the fatigue. I bought Solgar multi vitamins, hoping this would help combat it, but I have stopped taking them incase this tingling is related to the B6 they contain. Everything is such an effort. I have to go for another lay down now.