Welcome, Guest!

By registering with us, you'll be able to discuss, share and private message with other members of our community.

Tinaw

Members
  • Content count

    16
  • Joined

  • Last visited

Community Reputation

39 Excellent

About Tinaw

  • Rank
    Member
  1. Kay - new member

    Thanks! I was also expecting the lights show, as I experienced that during my last angiogram, but this time I didn't react much when the dye went in. I thought it might be because the brain has had some time to heal, but I have no idea. Again, good luck with your scan tonight!
  2. Kay - new member

    Thank you everyone, everything went pretty smoothly even though angiograms aren't my favourite. Now it is definitely time for a nice cuppa, and probably some chocolates to go with that :). A couple of weeks of waiting for results, though, but the doctor told me that everything seemed to look fine at a first glance. Hope your scan went well too, Kay!
  3. Kay - new member

    Good luck for tomorrow, Kay! I am going for my follow up angiogram (also tomorrow) so I feel the same way, hoping that everything is fine. Fingers crossed!
  4. Hi! I have had stents put in, as well as coils, this was 7 months ago. I believe that while the coils are metal spirals fitted inside the aneurysm, a stent is an expandable net which is fitted into the artery, to make the wall of the artery stronger, and also to make the blood flow easily through the artery. I had both coils and stents placed by angiogram at the time of my bleed. Because I had the stents put in I have to take blood thinners for a year afterwards, to prevent blood clots from forming. I was told that after a year the stents will have grown into the wall of the artery completely, and no more blood thinners will then be necessary. I don't know if having a stent placed after the initial bleed will affect recovery, but I imagine that the procedure will be easier for your dad as there is no bleeding at the time of the fitting of the stent.
  5. Delusions

    Oh, the delusions! Thank you for bringing this up. I had so many in the early days in hospital, and it took me a while afterwards to sort out what was true and what was not. After the SAH they kept me in an induced coma for a few days, trying to decide what to do, as my aneurysms were apparently very risky to coil. During this time, and a few days after waking up, I was often in another world. I genuinely believed that my husband, while I was in hospital, had redecorated our entire house to look exactly like the hospital ward I was in, with screens everywhere, hospital beds etc. I also remember him saying that he did this to be able to take care of me better when I got home... I remember being angry with him for doing this, as I believed he had spent a lot of money making these changes to our house which I felt were completely unnecessary. Also, before I had my SAH we bought a cat, and he was frequently in my delusions. When I closed my eyes I saw him, and a few identical cats walking past - and this was really every time I closed my eyes. I believed that my family had bought four more (identical) cats while I was in hospital, without telling me. I was upset about this, too. I remember the relief I felt when the cats eventually disappeared. (Except for the real cat, he's still with us, helping with my rehab by being lovely). Then there were many delusions about what happened in the hospital, and these I still don't know if they are in some part real or not. It was like being in an episode of "Grey's Anatomy", with the brain surgeons being envious of each other and stealing procedures from one another and such things. (I do hope that was not true, but didn't dare to ask the hospital staff :)). I could go on and on...it took a while before I dared to ask my husband if he actually had made the changes to our house, and if he had bought four more cats.
  6. I had a six hour flight about five months after my SAH, after having checked with my doctor that I was good to go. I was extremely worried and anxious before I went, there is no and had to persuade myself that I was going to be fine. In the end, I am very happy that I went, the sun and rest turned out to be just what I needed to relax and regain some confidence after the bleed. It felt like I got a small part of my old life back, as I have always loved to travel. If your doctor says its safe and if your husband feels up to it, you should be fine flying.
  7. Tinnitus

    Hi, I just wanted to make an update again if anyone else can be helped by what happened to me. As I said in earlier posts I had been feeling quite unwell for a while, my tinnitus had increased and my ear started to feel full and I couldn't hear too well. Also, I had headaches, I couldn't take a short walk without being short of breath, my legs were shaky and frankly, I was in a state of panic thinking that something was very wrong. All these symptoms I just put down to general fatigue, but I couldn't understand how I could be feeling so bad all of a sudden. Then I received a message from my doctor, that the blood samples they had taken a few weeks ago showed that I was anemic. They wanted to run some more tests, so I went to my GP's office. There, the blood tests showed that my blood count was very low, so low that my GP sent me to A&E for a possible blood transfusion. I was not given one, as I apparently looked to well for this. (I was not feeling that well, though). Anyway, apparently my iron levels were very low, and this is what caused the anaemia in my case. Instead of blood, I received an intravenous iron drip (never heard of it before). This is quicker than eating iron supplements and also doesn't upset your stomach at all. The body is given all the iron it needs in one go, and then it takes a while for the body to use the iron to actually increase blood count. After the iron drip I felt like a completely different person. It has been a few days now and all the symptoms I had before have diminished or gone. My ear hears fine again, tinnitus on very low volume (apparently anemia can cause or worsen tinnitus), I am able to take a walk without having to stop all the time, and the general feeling of unease has lifted. I am so glad that I had routine blood tests done a while ago and that my doctor contacted me. The anemia in my case is probably caused by the fact that I had stents fitted as well as coils. The doctors told me that for the stents to grow in to the blood vessels and not cause clots, I have been on two different blood thinners simultaneously for six months since my SAH. This has made me bleed a lot every time of the month, but I haven't given it a second thought, I never believed anemia could come so quickly. Since six months have passed now I only have to eat one blood thinner from now on and only for another six months, and I hope that this will help. If it doesn't, at least I am monitored closely now. So, if anyone experiences anything like this, it might be worth checking if you have any deficiencies that can be helped.
  8. Tinnitus

    Thank you so much, Gilly. I do look forward to a time when I won't panic anymore. It is completely draining and really doesn't lead to anything good. And still I have been in a panicky state for most of today. I actually almost went to A&E as I was feeling so bad. Now I am glad I stayed in bed resting instead of waiting endlessly in a hospital, getting even more fatigued. Still feel quite anxious though, but fingers crossed I will get some more sleep tonight. I will try to monitor my tinnitus from now on. I was going to, but it felt ok for a while so I never did. I have a bad habit of thinking that whenever I have a terrible day, I think I will feel that way every day from now on. Not very constructive. A diary would probably be helpful to be able to look back and see that there have been good days (and in all fairness I have had many good days since the bleed). BTG is truly a blessing on these days when everything seems hopeless.
  9. Tinnitus

    I just wanted to check in to say that unfortunately I'm feeling very low at the moment. I had three weeks when the tinnitus didn't bother me too much, but in the last few days something happened. As I woke up one morning, I suddenly felt that my hearing had decreased in my bad ear. I felt like I was under water, all sounds became really distorted. Also, the ringing was louder and I noticed I was super sensitive to noise. Even having a shower was too loud for me. My anxiety levels have since then risen, as this feeling wouldn't go away the next day. I went to an ENT specialist in hospital to check my hearing, and actually the hearing in my left ear was worse than before. No explanation given other than I probably had been exposed to loud noise at some point. She did not think this was connected to the bleed as I had no other neurological symptoms. Today, I am at an absolute low point. Extremely sensitive to all noise, difficulty sleeping, and very, very anxious. I'm finding this incredibly difficult to cope with, and lack of sleep just makes it so much worse. I'm sorry for the rant, but I really don't know where to turn, my poor husband is trying to cope too and is getting tired of listening I think. Did anyone experience anything similar, and any advice as how to cope with this?
  10. Hello! I think it is very individual when you go back to work. I have been away from work now for almost 6 months and I feel like I am climbing the walls here at home. I have a the support of a brain rehab team at my hospital, consisting of a doctor, a therapist and an occupational therapist and they seem to think that 6 months is a short amount of time to return to work after an SAH (I'm in Sweden so this may be different from what is recommended somewhere else). They keep telling me that returning to work too early may give you setbacks, which you also mentioned that you have heard. I guess they have treated many patients so they probably have the statistics on this, so I am listening to their advice not to rush back to work. (But it still makes me frustrated and I am hoping to do a few hours a week at work starting December). Anyway, I would say listen to your body and brain, I think only you will know when you are ready to go back to work. Take care!
  11. Tinnitus

    That's great, Casey, that you found something that is making the noise more tolerable and that also helps your hearing. I am still trying to sort of monitor in which situations my tinnitus gets worse, as I have only had it for a couple of months now. My tinnitus is tolerable at the moment but I would definitely look in to getting something that could help mask the noise if it gets worse. Thanks for the info!
  12. Tinnitus

    Hello again, and thanks for your support. I hope your daughter feels better, Win! And sorry to hear about your congenital deafness, Missy67. It is reassuring to hear that the tinnitus gets better over time. I am feeling a lot better at the moment, although the ringing is still with me, sometimes louder and sometimes very low. My mind has been elsewhere for the past week as I just came back from a holiday in the Canary Islands (after having read many posts here about flying post SAH I felt a bit better about it and decided to go for it - the trip was booked before my SAH). The stress before this trip was tremendous, but it all went fine, and this week in the sun with my family turned out to be a bit of a break from thinking unhappy thoughts and just listening to the sound in my ear...A bit fatigued now, but I feel that I regained a small piece of my former life by mustering the courage to travel.
  13. Tinnitus

    Thank you all! I had my ears checked and there was nothing visibly wrong with them, then again I did not expect there to be. Luckily, the noise is not constantly loud, but mostly a background noise, and I am learning not to panic when it does increase in volume. But I am surprised at the wave of emotions that I have felt since my ear started to bother me. I get these memories from being in hospital, waking up from being in an induced coma for a week, seeing my family again and their worried faces. It makes me so sad, that I made them so worried, especially my young daughters. I guess I have to remember these things to move forward in my healing process, but it is exhausting to be sad. I am very much looking forward to seeing the therapist on Friday. Meanwhile, I will try your advice Win, to think happy thoughts and sing .
  14. Tinnitus

    Hallå Daffodil ! Gothenburg is such a nice town, I used to live there for a while and have loved it since. Now I live on the east coast instead, but I try to go back sometimes to visit. Thank you so much for your useful tips and support. I tried the "sitting with it" and that really helps. I realise that I've tried to sort of run away from it, always keeping busy so I wouldn't notice the sound. This has me really exhausted of course. Rather than taking it easy as the doctor told me to, I have been doing the opposite...Anyway, as you suggested I have now booked an appointment to talk to a therapist about it. Up until now I have been using my husband as my "therapist", but although he's great at making me feel better, this time it might be better to see a professional to deal with my emotions. Take care Tina
  15. Tinnitus

    Thank you so much for your support, it really helps. It is also hopeful to know things will change and improve over time. And if the tinnitus persists, hopefully I will be able to accept it eventually. I am just so sensitive at the moment, and any changes to my health seem to make me anxious. I guess things that I may never have given a second thought before my SAH now feel slightly overwhelming. Anyway, I'm so glad I decided to google "subarachnoid haemmorhage" in English and found you (I'm Swedish, and there does not seem to be any kind of support group at all for this here, but then again - it's a small country).