I had my subarachnoid haemorrhage ruptured anureysm in May this year, I have suffered terrible with dizziness, strange sensations in my head, headaches, tremors in my hands, feeling spaced out, pressure feeling in my head,neck, gums, etc. it is horrendous most days, so bad that I don't want to wake up in the mornings
I have been to the docs so many times I have lost count, they have given me different meds and all of them make me feel worse. HELP, I don't really know what to do anymore
Hi Nicola...I have not had a subarachnoid haemorrhage, yet I do suffer with balance issues and dizziness...
I am not sure what one does for either...and then you have so much more going on ... bless your heart and often medications cause other problems...I am going to share this with the members in email because I think they can be more helpful...Thoughts out to you ~ Colleen
thanks Colleen, I know im still in the early days but I feel like I am getting no better and just wondered if anyone else has the same issues and if they've managed to get help for them
Reaching out to you, Nicola, just to say that you are NOT alone. The whole thing is so scary, and everyone's experiences are slightly different during the different phases. My experience pales in comparison to yours. I just want you to know that finding solace by being with others, being alone, finding a legal place to maybe indulge in some pain-assuaging cannabis... whatever it takes to get you through and be safe and feel there is a reprieve from pain... these are needed and huge things in recovery.
Sure hope I will not get in trouble for saying anything here.
My aneurysm wAs in the Circle of Willis. I suffer from balance issues, loss of memory, for example I will want blue scissors and they are yellow tape, I also have the problem where I am walking and my foot just forgets to set down and I will fall or start too. The drs tell me that blood on the brain can do odd damage. They say in time this heals itself. For me it has been a year and it seems almost worse.
Sorry you are feeling so bad :( I know I have been there and know what ya mean. It depends on where in your head the aneurysm was and my guess is that yours was around the primary motor cortex because those are the exact disabilities associated with trauma at that section. Be calm and listen to your doctors. If one of your doctors is not helping you after 4 or 5 appointments, see a referred physician. Time will heal and I know this from experience.
I'm coming up on my 3 year annie-versary. I had a ruptured SAH in October of 2011 & have 9 coils. I am still dealing with headaches, am experiencing most of what you are dealing with, i.e. dizziness, spaced out, neck stiffness, etc. I had an EEG last week to measure brain waves, I do have some abnormal brain wave activity going on. I meet with my Neuro this week to go over the results.
I wish you the best of luck in finding some relief to your suffering. Maybe someone out there has had the same issues & has found an answer..... Wishing you the BEST! ~ Ginger
I was dizzy too and they didn’t want me to fall.
Sometimes it takes a while for meds to work and it is hard to be patient. I have had grab bars installed in my doorways and I had my front entrance and steps redone (not a huge expensive project) They went over the cement steps, instead of digging them out, with that nice composit stuff making the steps deeper and put a railing.
I felt better because I was actively doing something to improve my situation and it helped my self confidence to know things were safer around my house and easier for me to navigate. I also had a second hand rail put in on the stairway going down into my cellar so I have one now on the right and the left.
I have what sounds like the same symptoms as what you are describing. I am 8 years post rupture and no one knows why I am feeling the way I do. I posted my symptoms on the FB support page recently, and someone said it sounded like intracranial hypertension. I googled it, and it sounds like it was written for me. Look at the symptoms and see what you think for yourself. I know I will be asking my Dr.
I am so sorry for your pain. I had a cerebral hemmorage in 2009, not sure where the blood came from because they located an aneurysm behind my left eye. It had not ruptured so the blood did not come from the aneurysm. I had my aneurysm clipped in 2010 and I have suffered bad optical migraines and the pain is so bad I asked my neurosurgeon to remove my eye. I have not had dizziness except when I take my meds at night. I have sensations or pain in my head at surgical sight if I sleep on my left side and put pressure on my head on the scars/surgical area. My hands do not tremble or anything like that. I may have had a stroke that night that lead to my hemmorage.
I have seen a few doctors and I have been on a lot of different meds and they work for maybe a month -3 then stop and so I have to keep changing meds. I am not sure where you are located but I would research and find a better neurologist.
I am in Kentucky and my neurosurgeon is the best in the world. He was voted the #1 neurosurgeon in the US last year so he is very compassionate, caring, the best surgeon. God & the doctor saved my life after all I went through and almost died. I would suggest trying different meds - are you on migraine meds? Ask your doctor to try seizure meds such as Zonisimide, Keppra those can be great help to people w/aneurysms.
Sorry I am not much help my suggestion is to seek new doctor and research meds. I have read a lot of magazines and attended some research labs for more help at the local universities. Sometimes finding the right meds is a long process - trust me been changing meds since 2010 and still changing them to find one that helps.
Don't give up - life is precious, short and a priceless gift from God. I have been down and low and scared many times but I am thankful to be alive and when an optical migraine hits me and the pain is so bad I cry and lose my vision I have to regroup and relax. Rely on God to help me
I too had a subarachnoid hemorrhage and they also discovered an unruptured Annie. Both wee coiled 2.5yrs ago. I have bouts of vertigo off and on since then. I sympathize with you very much. The longest I have gone is 4.5 months. It was great. I thought it was gone for good but, no it’s back again. I take meclizine once or twice a day. That seems to help a little. Hope yours goes away for good soon. I also have some sort term memory issues. I figure at 59 yrs old not everything is worth remembering. Wishing you good days to come~myra
Mine was in October 2011 (almost 3 years!!) and I remember those feelings well. It seemed like that spaced out feeling would never go away but it does get better. It is slow but you will one day start feeling like yourself again. I do experience spells of "spaciness" and feeling off balance from time to time but for the most part I am my old self. Be patient. Your brain heals in its on time.
When my wife was in the critical care unit at Swedish hospital in Denver still asleep but after coiling, we had a great nurse named Jason. We talked about recovery and expectations. He said she might wake up in a couple weeks, get up, and walk out of the hospital. Or she might wake up and not know any of us. Or anywhere in between. (As it turned out, when she did wake up she could do virtually nothing, not even sit up, so she had to learn everything again.) There is no way for the medical professionals to know what the outcome will be; in other words, there can be virtually any kind of condition. Today, almost three years later, my wife is very good and does not have most of symptoms you describe. But she does appreciate bannisters and railings, because she cannot depend on the left side contributing to good balance. Be sure to share your symptoms with your doctors. If they are good doctors, they will do what they can. I'll pray for your welfare.
I had my hemorrhage 4 years ago. I had every symptom you had and your description of it brings back the bad memories of that time. The good news is that they are memories. I rarely suffer any of those symptoms any longer, but it did take time. There is no pill that is going to fix this for you and like you said it may actually make things worse. I found that patience is the key to recovery although I am fully aware of the frustration you feel now. You may need to accept your symptoms for now and know that they will gradually improve. Once you relax and take a look at the larger picture, as each week passes you will see little improvements and so will the people around you. You may also fell worse some days, but hang on to those moments of improvement and let time work its miracles. Best of luck to you!
Oh Honey I feel your pain and strange sensations, or at least I felt them. Everything is a "normal" part of the healing of the brain. Your nervous system has been damaged due to the blood in there and it takes a long time for those neurons who have been misfiring to get the message to settle down. I had my SAH in Jan 2012 and I had most of those symptoms at the beginning, but I still have the headache. Yes THE headache. I've had one, single, long headache that gets super bad (like today right now I made it through just a few hours of work) to bearable. Dizzies are mostly better most of the time. The strange sensations are gone. They freaked me the heck out the first few weeks because no one had told me what was going on.
It gets better, but it takes time. What really helped me was to just try to go with the flow and journal about it.
Hi Nicola, I had rupture 3.5 years ago, coiled, grew again, so clipping surgery 1 year ago August. I too have-had all those symptoms. I am thankful for my primary doctor that backs me up & refers me to specialists, and my occupational therapist that is an angel! She does physical therapy with me as needed & knows eastern & western treatments, applies what’s needed. I also take st johns wort, took 1 325mg capsule a day for seasonal depression, recently doubled to 2 capsules a day & really noticed brain clarity! My vertigo came on strong one day in december, I didn’t know what was going on- scared my brain was acting up again, so went to emergency. They thought it was virus caused at 1st, still not sure if virus caused and/or nerve or brain & surgery damage, need more testing for that. My gut tells me it’s a combination of rupture damage to my brain and nerves, optic left eye effects- peripheral vision neglect, sinus pressure from allergies, I can’t take claritan type stuff- makes me cloudy & dizzy, but sinus rinse & nasacort nasal spray works good. Also still healing, adjusting, adapting, overcoming (My motto & persistent & determined!! and to skull & jaw muscle cuts & 5 mesh plates & 17+ screws & all their effects!! My dr told me at least 2 years to heal from crainotomy, information helps me to give myself time.
Anyway, wanted to share with all, noticing the dizziness-vertigo is common among us, that my Dr. did send me to an ENT & he sent me to a dizzy-balance center where I had VGN testing. The tests show I have 21% damage to the balance part of my right ear, & 29% left eye nystigmus trying to compensate. In other words, we get our sense of balance and space by info from our ears and eyesight sent to the brain to respond to. My brain us already working overtime just healing! So confusing and missing info from the ears & eyes, no wonder I’ve been a dizzy cloud! The good news is I have figured out triggers that bring on vertigo episodes to avoid, and our brains can compensate-adapt. Now I will start therapy to retrain my brain, build new ways to interpret the ear-eye info. I am getting better and have hope. I hope this will help you & others too. The hardest paths we’ve ever taken, but there is light
My rupture was almost four years ago. Everything you are feeling is normal. You will definitely see improvement. Definitely.
One step I skipped post-surgery -- which I strongly recommend -- is seeing a psychologist. I had never seen one before and it took me a good while, 8 months, to figure out that I needed help sorting everything out. It's a big deal, this aneuresym stuff, so go talk it through with someone. Some of the symptons you are describing are not related to your surgery. What is happening is you are more sensitive to anything that happens to your body -- a twinge here, an ache there, for example. It all passes, doesn't it?
My bet is you are experiencing some anxiety. Totally normal. You'll love talking to someone who isn't a family member, someone who isn't your surgeon (although shout out to all you great surgeons who saved our lives), but someone who can help you sort out how to live your life in a fun and more relaxing way. That will happen, I promise.
Dizziness, balance issues, memory lapses -- most of us have this. Oh well. But that other stuff ... go see a psychologist and allow them to show you how to enjoy everything you can. It'll be worth it.
You recently had a SAH aneurysm so that is probably why you are feeling so terrible. It takes a while to get over the constant dizzyness, pressure in the head and neck, tremors and everything else. I had my SAH 9 years ago and I still get dizzyness, pressure in neck, tremors, short term memory problems and feeling spaced out some days. It will get better, I don't feel these issues everyday now, just a few days out of each week and they are not as intense as the first year. Hang in there and it will get better for you as your brain heals.
Just like everyone else I am very sorry to hear that your just not feeling well at all. Take into consideration that it is only September and your brain is still healing. I will be going on 2 years on March 31, 2015 as a survivor and I know there are still issues for me from time to time. I get dizzy , I lose my balance, and some days just very tired. But for the most part I feel good at least the majority of the time. Your blood pressure can be off, you could have positional vertigo, your iron can be off. Anything is possible. Give yourself time and try not to do too much. Listen to your body and just rest as often as possible. I will tell you this: When its cold out ... I swear I get brain freezes with all the foreign material in my head. Its not a headache I get so much anymore but very weird sensations like you; almost like a twinge. Like I said its still very early. Just try and get as much rest and sleep as possible. Hope that helps you.
and to skull & jaw muscle cuts & 5 mesh plates & 17+ screws & all their effects!! My dr told me at least 2 years to heal from crainotomy, information helps me to give myself time.