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Found 3 results

  1. Hi all, Many of you know but I will give a brief history...SAH May 2017, small stopped bleeding on its own, left me with no problems...3 night in hospital a ton of tests....sent on my way with only meds looking at trying to minimize head pain.. Rcvs 3 days after getting home, they said it was severe, I had an angiogrm that went into my groin up into the areas in my brain that were in spasm and bleeding and put verapamil into the vessels...total surprise to me, no one had mentioned this as a possibility...8 nights ICU, don't remember about 4 days, 2 weeks in rehab...left me with core weakness, couldn't sit up, balance issues and sensory issues. I also have problems with being overwhelmed, such as with a lot of people moving around, or walking past me and terrible fatigue... So I would like to know if others here whose story may be like me have had a SAH and RCVS ...did you know you were at risk? I was just so blown away with it. How did you recover from one or both?....I am in the US, so I am wondering if treatments differ..I was at a very prestigious hospital in Boston that has a first class neuro department.. May seem odd for me to be wondering about this after 2 years but I still am...I guess I am still trying to understand it all.. Thanks Jean
  2. Guest

    My RCVS Story

    I am 45 years old, and in June I had a stroke. It started in late May with 4 thunderclap headaches over a period of 2 weeks and 3 visits to the ER. "Luckily", I had one episode at my doctor's office so she saw first hand what happened and got me an appointment with a neurologist. They found nothing in the ER on either CT scan or lumbar puncture. By the time I went in there the 3rd time, I think they thought that I was just a drug seeker - as I told them specifically which drug helped relieve the headache the first time. I had an appointment with a neurologist on the same day as the 3rd ER visit. He was completely dismissive, thought it was a migraine and gave me medicine for it. I basically begged for strong pain medication "just in case" the thunderclap headache happened again. He was extremely reluctant as he thought I was likely to abuse it, saying it's easy to become addicted. He even griped about it to the medical assistants outside his office, while waiting for approval for an MRI. That same day I had my MRI, they saw a bleed and I was admitted to hospital. Following day I got a traditional Angiogram, where they saw multiple vasoconstrictions. At that stage I was doing fine on narcotic pain meds, so the plan was to take a "wait and see" approach while on pain meds and stay another night in hospital. That night I had a stroke, luckily I was in hospital. After the stroke I was in Critical Care for a week. Immediately after the stroke (1 day) I had severe vision issues and overall weakness and inability to move. After a couple of days, the main issues was weakness in my right hand. I did suffer from overall weakness, but I think that was mostly due to being in bed - and it got better once I started to move around. I was released after 2 weeks, and did physical and occupational therapy for another few weeks. The only residual issue I had/have is a numb toe! In August, I felt numbness in my right hand, up my arm and into my face. When the numbness hit my tongue, I decided to call 911. While nothing was obvious on the MRI, another traditional Angiogram, showed constrictions in a different area. The neurologist said it was a TIA. In September, I had another episode of "weirdness" in my right arm. I thought that I had just been at the computer too long. The next day, it seemed like my arm felt after the August event. In October, my right pinkie finger went completely numb, when the numbness resolved after about an hour, I had tingling in my hand. When it happened again the same day, I got worried. When it happened the third time, I went into the ER. The neurologist on-call thought it was a nerve problem, and that I had hit my funny bone. I was just happy to be able to go home. Two days later it happened again. In the past week, I have had an MRI and EEG. The MRI was normal, considering my history. The EEG doesn't seem unusual, and better from one I had in August, although that is not the final report. Currently, the prognosis for the recurrent numbness is possible seizures. I have been prescribed seizure medication, but having a hard time coming to terms with yet another issue, and medication. Prior to the stroke I was overweight, had high blood pressure for which I was on medication, and taking both SSRI's and birth control pills. All of these are linked with stroke and RCVS. Hormones are also linked, and this is something I am interested researching more. I also had periods of "stress headaches", I never officially told they were migraines and they didn't feel like them. Despite the stroke and being off SSRI's, I have felt better than before and more "alive". As a bonus, I lost a lot of weight thanks to a total of 3 weeks hospital food. The latest episodes of numbness and possible seizures, have been a slap in the face. I do not want to take any new medications, and not willing to accept the seizure prognosis. For me, having a neurologist that I trust and can talk to has made a huge difference. However, since RCVS is uncommon and is not really understood there is not a lot of information out there, and medical studies are often difficult to understand. I am interested in connecting with other survivors to discuss similarities to the initial event and diagnosis, and in their own recovery progress. Lesley
  3. Hi Everyone, I had a series of minor strokes on October 3. After lots of time in the hospital they finally did an angiogram and found vasoconstrictions. After other tests they determined I had RCVS. It's rare and I really need some input from someone else who has it. It's been two months now and the biggest problem I have is fear, as well as not feeling normal and wondering if I ever will. I have deficits in my right arm and leg and my left hand that constantly remind me of what happened and scare me about what might happen. Any little headache or weird feeling in my head makes me scared, and the past couple of days my vision has been weird, so I'm afraid of what might happen. This was brought on my birth control pills (which I took to prevent endometriosis pain), pseudoephedrine allergy pills and a boatload of stress from family visits when I was too busy at work and school over the summer/fall. I have been off the birth control since the stroke, have totally changed my eating habits so I get tons of vegetables every day and I'm riding my exercise bike at least 30 minutes per day. I'm trying to lose weight and it's coming off slowly. My husband tells me I'm fine, the doctors say I'm fine, but I don't feel fine. I get exhausted just taking a shower or any time I have to stand in one place, because both legs shake like crazy. I'm really tired all the time, but it's not a sleepy tired, more like exhaustion. I can't even have a conversation in person or on the phone without feeling exhausted afterward. I no longer drive because I'm scared and I don't go out in public if I can avoid it because I don't want to get stuck in a line or something while I'm so tired. I have a follow-up MRI scheduled just before Christmas so they can tell me what things look like in there. Until then, my imagination is running away with me. I know you're not supposed to let fear control your life but I need to know how to make that happen. Anyway thanks for reading and any advice will help. Thank you.
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