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Hi everyone, Today, I finally reached 10 years. What a journey. In the beginning, there was pain and the fear of not knowing if I would live or what kind of life I would have. The weirdness in my head and if I’d ever feel anything other than pain and dread. My brain was a filing cabinet full of knowledge and order that tipped over and made a mess all over the floor and I was incapable of picking any of my files up. However, something happened along the way and slowly my files started finding their way back. It takes time, hard work, a lot of crying, and it takes hope. The folks on this site helped me tremendously to see there was and is hope. I sit here today 10 years later to tell the “newbies” to have hope. One week leads to one month, which leads to three months, six months, one year, and the next thing you know you are sitting in my spot 10 years later hoping for another 10 years. Xoxo iola
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Hi, My name is Jo and I am 52 years old. I have twin boys who are 21 and I am a primary school teacher specialising in PE and Sport. Three weeks ago I was in the gym and suddenly I experienced pain up the back of my head and over into my forehead. I went home, took a few painkillers and rested for a few hours. Over the next few days I continued to suffer with a headache, developed pulsing tinnitus and then my lower back/hamstrings completing seized up so I couldn't pick anything off the floor. Stupidly from Thursday until Tuesday I continued with normal life (trip to hairdressers on Friday, food shopping on Saturday, work on Monday and Tuesday and even went for a run thinking I would shift the headache and it might loosen things up..........I know!). On Tuesday I realised the headache, tinnitus and general feeling of being unwell was not going away. I tried to contact me GP but there were no appointments so on Wednesday my husband persuaded me to ring 111. I was advised to go to A and E. After a CT scan, lumbar puncture and angiogram I was diagnosed to have suffered a NASAH. I stayed in hospital for a week and was then discharged gripping my NASAH leaflet and not quite believing that the last few weeks had really happened. I am a very fit 52 year old. I have been a runner all my life and 3 weeks ago I was running 3 times a week and going to the gym 3 times a week. I have never smoked, I do not drink and I have a healthy diet. I am finding it really difficult to accept that this has really happened. It has been a week now since I was discharged. Having read some of the posts on this forum I know I should be grateful for the how well I appear to be recovering..........since Tuesday I have been walking 2/3 miles every morning and 2/3 miles in the evening. I have not taken any painkillers since Monday and I am not feeling tired. My main symptoms are ongoing tinnitus (now just ringing not pulsing), hearing loss (my ears feel full and hearing is muffled) but also really sensitive to noises like a bin lid closing, a saucepan clattering, paper rustling or my husband coughing! I also just have a feeling of being slightly out of it/out of body feeling and really struggling to sleep. I know I must be patient with my recovery but I am finding it hard to accept that this has happened. I am worried about how I will return to my job if my hearing and sleeping does not improve. How will cope with a noisy class of 6 year old and the screech of a PE whistle?! Thank you for anyone who reads this and any advice would be greatly appreciated Jo -
Hi all🌺 Thank you for sharing all your stories- you have NO Idea what a help And comfort It has been the past few Weeks. 2 weeks ago my husband- Sam-had a bleed. He is 56, fit and bit of a “health freak”. He was at the gym, early morning session, feeling great, when he felt a “pop” in the back of his head (while doing chest press ) followed by intense discomfort. It was quickly followed by dizzyness and nausea. He did not pass out. He managed to get a hold of me, telling me he had probably pulled a muscle badly in neck, and could I drive him home. As I got I him, the nausea, pain and dizziness was bad. But we drove home! Can’t really believe we didn’t go straight to hospital. At home this LOUD convulsive vomiting started. It Was different from normal vomiting. It went on and on. With so much neck pain every time he vomited. We were talking about what to do. Sam wanted me to examine his neck (I am a physio). I didn’t want to. Thought perhaps he had a badly herniated disc. Or meningitis. or even a broken vertebrae. I never thought he had a bleed. There was no neurological sign. No loss of strength. The GP came to our house. Pretty much took one look at him, and called an ambulance. At the local hospital they did a scan- and SO MUCH to our shock and surprise- it showed a subarachnoid bleed in the brainstem. Quickly he was airlifted to Much larger hospital. More Scans. And also an operation- which showed there was no aneurysm. After that everyone seemed a lot calmer. He stayed in intensive care till the next day-and in the hospital for a further 4 days. His early symptoms In the first days was nausea, still some vomiting , headache, neck pain, tearful, and pain in his buttocks. Over the next days he was given pain medication, fluids, rest and monitoring. Hospital was great. And it quickly became clear- that he was so so Lucky. He can think, and talk and move freely. For that we are gratefull. It has been a crazy ride. The first scare, supporting our sons, comforting my husband in this scary time. He was just SO brave and strong though. Back home he is still on painkillers. In the first days mainly for headache. But that is so much better. He forgets a few Things.. misses a word occasionally. .. struggles with too much noise or screentime. But.. we know it could have been so much worse. His absolutely biggest struggle right now is an INTENSE pain in his lower spine / sacrum Area. It takes his breath away. Makes him cry out in pain. Makes him uneasy in standing and walking. He is very anxious to find out what it is- but doctors don’t seem to agree. One doctor thought it was residue from the bleed in the spinal fluid. Another totally dismissed this, said it was the lying down/ inactivity. He DOES move around - Sits in chair, goes for short walks. Has any of you experienced this?? How long did it last? What did you do ? Hope someone can share their experiences and advice. Much Iove Tanja
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fatigue What is Post Stroke Fatigue?
Eruditedk posted a topic in Subarachnoid Haemorrhage Discussion
Good morning, I hope everyone is feeling well, its sunny outside in the UK for a change, we are all happy to be alive... Genuine question in need of explanation please.. What are Post Stroke Fatigue or the actual Post stroke recovery pains and what could be something else that needs investigating I suffered my SAH at the end of January, I was told I would suffer lower back pain as the blood dispersed but never did... I am vastly weaker physically than I was for sure and have the energy levels of a 300 year old which has presented in my evenings being uncomfortable rather than painful after a day of doing very little.. Then a month ago I had to move house and the old me kicked in and my fiancé and I did the move ourselves, packing renting and driving vans unpacking the whole thing and although I was tired we got through it.. Then trying to settle I decided 3 weeks ago to buy a greenhouse on ebay, it was an incredible deal but 2 hour drive to dismantle it so I booked a van and off we went at 7am A strenuous 14 hour day plus 4 hours driving and a greenhouse in peices is in our new garden Since then, I feel like I went 12 rounds with Mike Tyson... I hurt everywhere from my toes to my nose.. aches, pains sore and it will not go away... it has lessened a bit in 3 weeks but I am still feeling quite broken and don't know what to do with myself... I had always been very physically fit and strong with incredible recovery powers... Is this Post stroke fatigue..?? Did I just break all the rules and advice I am reading on this forum of being good to myself... Is this the way my body will behave if I push too hard.. for the first time in my life I feel my age and its really depressing me My doctor admitted she knows very little about SAH and the recovery process, she has called me in for blood tests on Monday so see if I have infections or viral markers.. I have increased my fluid intake and have done next to nothing in 3 weeks, the greenhouse is still in pieces in the garden like it's mocking me for being weak Should every part of me hurt after 3 weeks.. apart from not having major headaches I feel worse than when I left hospital 3 months ago... Any advice or thoughts on what I have done to myself or what help I should be seeking please let me know... I am desperate to do things without being busy or being able to self medicate with "herb" I am driving myself and everyone around me nuts.. The one positive if it is a positive is I stopped smoking herb after 30 years of heavy use in a heartbeat... the day my SAH happened was it... so I do wonder if I am suffering other kinds of withdrawal... All ideas and opinions welcome, as said at the beginning the Sun has come out and I want to go out and play, not just sit around like a lump complaining of my aches and pains, that is not who I was or who I want to be... If its sunny where you are I hope you can enjoy your day and the weekend coming.. D x -
I am just wondering, now that I am 2 1/2 years post SAH, and still suffering from dizziness/vertigo, and constant head/neck pain and pressure (I have other medical conditions), if anyone else has this. Although my medications list "dizziness" as a side effect, I have forgotten to take my noon dose of Gabapentin (Neurontin) Zanaflex and Topiramate on many occasions and noticed that my dizziness/vertigo yet worsens within 2 hours of a missed dose. Does anyone else feel constant head pressure and dizziness, despite medications? Even taking Vicoprofen (7.5 hydrocodone/200 mg. Ibuprofen) does not take the head pain/pressure totally away). I have to pretty much knock myself out with meds to sleep at night, taking Klonopin and Zanaflex. The pain at "dose" time, 5:30 a.m., awakes me. Has anyone been approved for Social Security Disability following SAH? I cannot perform any kind of work with this constant head pain. I was a paralegal for 35 years, which requires a lot of sitting. I had my appeal hearing yesterday and the occupational expert stated I could do work such as assembling small parts or being a mail sorter, although I also suffer from bi-later carpel tunnel syndrome (constant, throbbing hand/forearm pain). The constant head pain is agonizing, and I do not know how they think I could be standing to be a mail sorter when I have arthritis in my feet/ankles. I have had injections in them also. My attorney did raise the point -- would any employer want to take the risk of me being there on all of the medications I take? I am literally miserable and enjoy very few things in life that I used to do. Friends have all backed away from me, I guess because I can no longer do things I used to do and I am no longer as fun to be around. So, I do things alone like walk my dog, despite my foot pain, as that is about all I can do to not think about the pain. True, I do sit at this computer and type, but my hands are in horrible pain that keeps me awake at night. I wear hand braces on both hands to sleep but often take them off in frustration because the Velcro tangles in the sheets when I toss and turn. Your input is greatly appreciated ! -
Hi, everyone. I'm new here so allow me to introduce myself. My name is Deb, married with 3 children. I had my SAH on July 17th. I was running a bath and at firs just felt a bit odd, like I was watching the bath fill through a fog. I stood to turn on the cold tap and collapsed to the floor when I came around the bath was full! I tried to stand and realised my left side wasn't working, I felt (and heard) a kind of snap in my ankle and fell to the floor again. Somehow I managed to drag myself downstairs to tell my husband. I was then suddenly hit with the most horrific pain in my head and was violently sick. Husband rang out of hours doctor who , after listening to my husband, phoned an ambulance. I don't remember anything else until 3-4 days later. Spent 3weeks in hospital, had numerous episodes of numbness on left side, CT scans and lumber punctures. I was allowed home on the proviso there was someone at home to "look after me" Well, there was but it didn't last! I have a 14 year old daughter who has suffered with anorexia for almost 3 years, I am her main carer and to say her illness is stressful is an understatement. Pretty much straight away I was back caring for her. It's very much like having a newborn, she is currently beginning to recover (finally) and she has a very strict meal plan. So my day consists of watching the clock for the next meal, snack, shake etc. She is home tutored so I have a constant stream of people in and out of my home, between tutors, doctors, therapists etc..... I really haven't had time to come to terms with my own illness, and I just don't have time for me. I am still suffering terrible headache, noises in my head, (probably tinnitus) fatigue, poor memory, among other things and the thought of going out and seeing people fills me with dread. We are going for a meal tomorrow to celebrate me eldest daughter's new job. I am dreading it, partly the being in public and partly because it's my first time to drive, only got my license back yesterday. I look forward to being part of this community.
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Hi there, My mum is 48 and had a SAH on the 19th of March 2014. She had the coil operation on the 20th of March and was discharged from hospital on Monday the 7th of April. Whilst in hospital my mum also had vasospasm, seizures and hydrocephalus. A lumbar drain was used to deal with the hydrocephalus and she is on keppra 500mg for the seizures. I was so pleased to have mum home and have been doing my best to look after her but she has had a constant sore head since she's been home. She tells me that the pain isn't getting worse but some days she can barely do anything apart from sleep or hold her sore head. The pain relief she has is codeine 30mg but this doesn't seem to have much impact. She finished her nimodipine course at home and then restarted her blood pressure tablets. I know that I am lucky to still have my mum with me without any major physical problems but I feel so helpless to see her in so much pain! She's been home for a week now and thought I would see some sign of improvement. This Wednesday will be 4 weeks since her SAH, and I know this is still really early in her recovery! How can I help her? Any tips for dealing with a sore head? She doesn't think she needs a doctor but when do I phone for advice? I have an oximeter, blood pressure and heart rate monitor and home and all of these things are fine. She's eating breakfast and dinner and drinking fluid - I've even got decaff tea bags! Some advice would be great! I want to look after my mum - I don't want her to get unwell again! Thanks, Chris -
Hey everyone. So gald I found this forum. I had my PSAH (will have my 2nd angiogram tomorrow to see if an aneurysm shows up or not as the first was negative) on 7/18 after I came off of the field playing in a soccer game. After a CT, LP, CT angiography, angiogram, MRI, and MRV the docs diagnosed me with a perimesencephalic SAH. Doing fairly well, been home 5 days and taking it very easy. Headache is mild at best, but do have that "fuzzy" feeling in my head, some tinnitus, a "stopped up" feeling in my left ear (feels like I have a hangover and water in my ears). Moving quickly is not fun, but getting better. The worst pain I have now, which can be intense but brief, is a pain along my sacrum and both buttocks that is throbbing (and corresponds to a similar throbbing but mild in my head) that lasts for 5-10 seconds after I stand up from sitting or lying down. Anyone else have / had this? Hope my test tomorrow comes out well. Just found out from my GP yesterday that my first CT scan that they thought was negative actually showed the bleed in retrospect after the MRI/MRV results. Up until now the LP was thought to have been positive only due to the trauma of the test. I look forward to chatting and sharing with you all. Oh, I almost forgot - also have a lot of adverse nerve tension in both legs - can't raise them straight up, straighten out my knees when sitting, or bend over yet. And, last but not least, straining in the bathroom is met with the same sacral / buttock pain.
