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Found 9 results

  1. 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
  2. Hello again. I’m seven and a half weeks post aneurysm SAH and I still get really bad pain down my spine which now also affects the area around my diaphragm. Has anyone else had this pain and if you have how long does it last? Someone at the hospital said it’s caused by blood in the fluid draining down the spine but it should go once I’m up and about. I left hospital four weeks ago and make myself walk every day increasing the distance. Not very far but I’m up to three miles a day which I’m pleased with as when I came home I needed a Zimmer frame to get around the house. I’d be grateful if anyone can give me an insight into this back pain from their experience. Thanks 😊
  3. Hi, I'm new to the site. I had my SAH end of May this year. I've been reading your blogs over the past months, whilst in my recovery, which have been a great comfort to me knowing that i'm not on my own. I has a Spontanious SAH, the paramedics came after 2 hours, missed every red flag, took me to hospital, saying I was over reacting and just had a headache. Was left for a further 5 hours, was only given Ibruprofen. My daughter said it was so upsetting to see me so ill. When the doctor decided to look at me and send me for a CT scan, all hell broke out. My daughter said they were pumping me with morphine and said I was being blue lighted to the Queens Medical Hospital Neuro unit, where I was placed in ICU After my SAH, I also developed Menengitis, to be honest I don't recall much of what happened, was told I was in ICU for 4 days until stable and was in hospital for 3 weeks. I really did feel like I had been away somewhere, it was like i'd been on another planet and had to relearn everything I took for granted. I had experienced sensory problems, hypersensitivity with hearing, photophobia and had lost the sense of smell and taste. This has slowly started to resume, leaving me with hypersensitive hearing and sensory overload, which makes me feel quite sick and disorientated at times. After the first 9 weeks I started getting different pains developing in my feet, then my hands and now it's also gone into my elbows too. The pain is like a burning sensation, my hands and feet swell and get sore and stiffen when resting. I find the mornings and evenings the worst. I'm also finding that my hands are starting to lock when I try to open and close my hands. I've been put into Pregablin 600mg whuch has eased the symptoms a little. I'm worried that these symptoms are here to stay. I know I am still very early into my recovery. I still get the weird sensations of cold running water in my brain and still have lapses of concentration, with fatique. But has anyone else had this pain develop in their hands and feet. My doctor thinks it could be central post stroke pain. Could anyone give me advise about this or share their experience, I would very much appreciate any support or advise please. Warm Regards Bev x
  4. So here I am 20 months post SAH and coiling, in constant pain laid in bed overheating. The levels of my frustration have got to breaking point, I feel so useless, I have no energy or motivation. I use to be a person who took on any and every challenge, a person people turned to for help and support. I hate this version of me, who sits and watches my family argue over who’s turn it is to cook or clean, my house is an absolute mess now with so many diy and maintenance jobs piled up and I can’t face coping with any of it. I feel so overwhelmed by all of it that I can’t bear to see it, so I shut myself in my bedroom. I have started to resent family and friends for being able to go out and enjoy life whilst I’m stuck here. Most of my friends have vanished since my SAH and the few that have stayed must be so sick of me, my anger, impatience, tears and inability to do things. I feel like a ghost trapped watching everything fall apart and not being able to do a thing about it, I often wonder what the point of surviving was. The doctors do tests and tell me to give it time and keep taking the tablets, I’m piling on so much weight that I can’t bear to look at myself anymore. So I sit here and wonder if I did actually survive, or is this hell?
  5. My partner had his bleed on 7th Sept. he had his operation and had 2 aneurysms coiled on the 9th. He was then discharged from hospital on 18th. since being home he has suffered pains in his lower back,buttocks and legs but the paracetamol has not helped. More recently he has been using heat pads and a hot water bottle which has eased it a little but now he feels the headaches more. He can’t take Codeine as it makes him feel really ill, on top of this he now has a cold. He rarely sleeps for more than 3-4 hours in a day and only after he has taken his daily Asprin. We are hoping to be able to see our GP tomorrow but does anyone know of anything more that he could be doing to help with the pain/lack of sleep ?
  6. 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 !
  7. 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.
  8. 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
  9. 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.
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