Search the Community

I’m so pleased to have landed on this group and to be able to read about similar experiences. I suffered a non aneurysmal perimesencephalic subarachnoid haemorrhage three weeks ago - massive sudden onset of headache and neck spasm - radiating from base of skull at the back round to temples. Went to local small emergency unit who referred to bigger A and E dept. CT scan showed no bleeds (apparently) and since I was fine other than neck pain and rushing pulsing headache, I was given diazepam and told I could choose to go home (after 9 hrs in A&E waiting room or wait there overnight for a lumbar puncture as a double check but there were no beds anyway). Went home. Headaches continued and on getting up had strange aches in lower back and down tops of back of legs. Back to A&E for another 12 hrs in the waiting room until finally got admitted onto a ward. Lumbar puncture next day. Results the following day indicated bleed. Given Nimodipine and ambulanced to neurosurgery at St George’s South London. Review of the original CT scan was determined to have shown small bleed so confirmed with CT angiography. I was pretty well throughout except for stiff neck and headaches, and weird feeling at the base of my spine on getting up to walk which was always simultaneous with rush and ‘swimmyness’ at back of head that then settled after a minute or two. I’ve always suffered with bad neck though for last 15 yrs. I’m ‘ok’ three weeks on but what’s worrying me is that although the neurosurgeon and reports I’ve read say this NAPSAH doesn’t recurr, I actually had three instances of that exact same phenomenonal headache, like being hit across the back of the head and then rushing and radiating round, prior to this recent one. I didn’t seek medical attention previously because I thought it was neck spasm and it did go after an hour or two with anti-inflammatory painkillers. All 4 occasions were during same kind of intimacy and they weren’t consecutive but all within last 6 months. Neurosurgeons say the former three were most likely unrelated to a bleed. I wondered if anyone else has suspected that they’d had more than one episode? And also around the time of the earlier episodes I also developed a constant buzzing tinnitus. Wow. I do sound like such a moaner, especially as others have obviously suffered more lasting effects, but it’s all been a bit scary recently.

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