| kirk: | let me introduce myself | 14:35:51 |
| kirk: | I'm Kirk McElhearn, an associate member of Cavernoma Alliance | 14:36:06 |
| kirk: | I live in France, and also work with AA in the US, editing their newsletter | 14:36:17 |
| kirk: | so while I'm not a medical professional, I'm pretty much up to date on a lot of the issues dealing with cavernomas | 14:36:34 |
| ianstu: |  | 14:36:58 |
| kirk: | so, would everyone like to make a brief intro - who you are (though you don't have to say your name if you don't want to), how you're afflicted, etc? | 14:37:04 |
| jo: | I'm Jo I have multiple cavernomas and have had two large bleeds. | 14:37:04 |
| kirk: | btw, I have two brainstem cavernomas, and have had several bleeds | 14:37:22 |
| ianstu: | jo did you get my message about updates | 14:37:59 |
| ianstu: | ? | 14:38:02 |
| Lyn: | I am Lyn, I have a brainstem cavernoma and have had 2 bleeds, the last one being a year ago. | 14:38:16 |
| TallPaul: | cavernoma in my pons, one bleed, left me with epilepsy, migraines (just getting over one now), numbness down my right side, and various other neurological shit | 14:38:42 |
| jo: | yes I did thanks and will update soon I hooked up with Jeanette on the US forum who joined recently | 14:38:43 |
| pinhead: | my cavernoma is in my cerebellum.a known bleed in 2006 but asymtomatic since then | 14:38:58 |
| ianstu: | i am ian stuart. i am co-ordinator of CA UK | 14:39:25 |
| ianstu: | i had a bleed 22 years ago in my pons | 14:40:06 |
| ianstu: | i am symptomatic | 14:40:22 |
| kirk: | ok, so where do we start? who has a question or a comment to make? or just a gripe... | 14:40:25 |
| : | Cristyn joins General Chat | 14:40:37 |
| jo: | i've just found out I dont have any of the 3 gene alterations known to cause CA and feel frustrated and alone! | 14:41:27 |
| kirk: | well, it turns out that there are possibilities of having multiples without the known genes | 14:41:51 |
| kirk: | are you the person who posted about that on the US forum? | 14:42:00 |
| Cristyn: | Hi I am Christine and I have a cavernoma in the left front of my brain which is inoperable. I had a bleed two years ago which has left me with speech and memory problems. | 14:42:09 |
| Cristyn: | If it wasn't for this organisation I wouldn't have understood a word that was said to me! | 14:42:43 |
| TallPaul: | Hi Cristyn | 14:42:57 |
| Cristyn: | I didn't even have what a cavernoma was explained to me. | 14:43:01 |
| ianstu: | hi Cristyn | 14:43:04 |
| Cristyn: | Hi! | 14:43:04 |
| kirk: | yes, kudos to everything that Ian and Paul have done! | 14:43:05 |
| jo: | yes I am and thanks for reply. I know you can have sporadic form without the known genes but as far as I know this is not very common? | 14:43:09 |
| ianstu: | great | 14:43:18 |
| kirk: | from what I understand, this may be common, but researchers really don't know | 14:43:27 |
| TallPaul: | blushes | 14:43:28 |
| jo: | hi cristyn i'm not very good at this. am at work so very slow in responding | 14:43:41 |
| kirk: | personally, I have two, but this seems to be explained by the presence of a DVA (developmental venous anomaly) which is found in some cases with multiples | 14:43:52 |
| Cristyn: | Hi Jo. | 14:44:02 |
| kirk: | don't worry if you don't reply quickly; this is a slow-motion process for many people | 14:44:13 |
| kirk: | we've got two hours | 14:44:16 |
| jo: | Kirk isnt it a case of gene deletion which is expensive to test for? thats what Connie from US forum said | 14:44:21 |
| kirk: | yes, that's what Connie said it might be | 14:44:31 |
| jo: | Kirk have you had genetic testing? | 14:44:44 |
| kirk: | I'm inclined to use the answer that my neurologist often says to me: "We just don't know" | 14:44:45 |
| kirk: | no | 14:44:48 |
| kirk: | here in France, they shy away from the genetic testing, because of cost | 14:44:59 |
| kirk: | but my neuro had my son do an MRI; he has nothing | 14:45:07 |
| jo: | Can a DVA show up without gadolinuim contrast? | 14:45:18 |
| Cristyn: | Is genetic testing usually offered? Or only if you have multiple? I have two children, so it does worry me. | 14:45:22 |
| kirk: | generally, they only do the genetic testing if you have multiples | 14:46:03 |
| kirk: | in my case, two close together, it's most likely not true multiples | 14:46:12 |
| kirk: | most people with multiples have more than two, often dozens | 14:46:21 |
| jo: | Cristyn I had testing done through Dundee with Dr Lisa Walker but I saw her in the south. You can get your GP to refer you. It is free on the NHS | 14:46:21 |
| Cristyn: | ok thanks | 14:46:30 |
| kirk: | note that genetic testing only finds if you have one of the known genes | 14:46:47 |
| TallPaul: | Cristyn have you seen our leaflet http://www.cavernoma.org.uk/opus132/Genetics_final_lores.pdf - that might help? | 14:46:53 |
| kirk: | as jo pointed out, she doesn't have them (sorry, known _mutations_) | 14:47:01 |
| kirk: | but it's possible, even likely, that there are other mutations that haven't been discovered | 14:47:18 |
| jo: | I thought multiples = genetic and sporadic = only one. But am having to start widening my thinking as a result of recent test I had | 14:47:25 |
| ianstu: | jo come to the Forum we will have Jonathan Berg from the Uni of Dundee | 14:47:37 |
| kirk: | as I said, there is some thinking that there can be multiples with a DVA, but it seems this means a smaller number, and close together | 14:48:01 |
| kirk: | but that was the common way of thinking until recently | 14:48:11 |
| kirk: | Conne Lee told me about the DVA connection just a few months ago; I think it's something that researchers have only recently found | 14:48:28 |
| Cristyn: | I have read the leaflet and it was very useful and reassuring. I only found out I had a cavernoma a little while ago, though, so I still worry alot. | 14:49:52 |
| kirk: | cristyn, what worries you? what have you been told? | 14:50:10 |
| : | pippa joins General Chat | 14:50:58 |
| Cristyn: | Well, I've been told that the cause of my brain haemorrhage has finally been found to be a cavernoma but that I won't have any more problems and I should try to forget about it. | 14:51:00 |
| Cristyn: | When I queried how they were sure, they weren't. | 14:51:17 |
| kirk: | cristyn, do you have any symptoms? | 14:51:17 |
| kirk: | heh, they can't be sure about these things... | 14:51:27 |
| Cristyn: | I have problems with speech and short term memory, due to where the haemorrhage was located. | 14:51:47 |
| kirk: | some people never have problems after a bleed, some never have bleeds, and some do have problems | 14:51:49 |
| kirk: | ok, so to say "you won't have any more problems" isn't really true then | 14:52:01 |
| Cristyn: | It could have been so much worse. | 14:52:04 |
| Cristyn: | I'm slowly getting used to it now. | 14:52:30 |
| kirk: | you know that you should avoid anything that is a blood thinner, right? aspirin, anti-inflammatories, etc. | 14:52:31 |
| : | claret joins General Chat | 14:52:33 |
| Cristyn: | Well, I was told that to start with, however, the consultant said that I was ok now and should just not do anything stupid where I was likely to hit my head. | 14:53:23 |
| kirk: | hmm, hit your head; like otherwise you do things on purpose to hit your head...  | 14:53:47 |
| Lyn: | Kirk, what about Ibuprofen? | 14:53:48 |
| ianstu: | hi claret | 14:53:54 |
| kirk: | that should be avoided | 14:53:54 |
| kirk: | that's an anti-inflammatory | 14:53:59 |
| Cristyn: | Yeah, that's what I thought! | 14:54:05 |
| Cristyn: | Hi Claret | 14:54:09 |
| kirk: | unfortunately, that means that, for us, we have few choices with painkillers | 14:54:11 |
| kirk: | we can take paracetomol, or something like codeine | 14:54:24 |
| Cristyn: | Good old paracetamol | 14:54:26 |
| Cristyn: | Does anyone else still suffer with major headaches? | 14:54:45 |
| kirk: | it's actually a problem for me because I have arthritis | 14:54:49 |
| Cristyn: | Is that common? | 14:54:50 |
| kirk: | Paul does | 14:54:51 |
| pinhead: | is it ok to take regular paracetamol as I read yesterday that that could act on the clotting process | 14:54:55 |
| kirk: | TallPaul here | 14:54:56 |
| kirk: | many people do have regular headaches | 14:55:07 |
| kirk: | paracetomol - what do you mean by "regular"? | 14:55:15 |
| kirk: | if you take it a lot, it may have some effect on your liver | 14:55:49 |
| kirk: | but I've not heard anything about clotting | 14:55:54 |
| pinhead: | my GP has suggested them at maximum dose for arthritis | 14:55:57 |
| Sieve: | Sieve here - I have multiple CAs and have serious headaches | 14:56:30 |
| Cristyn: | My mum has dvt (deep vein thrombosis) and she can't take anything that affects the blood. She's ok with paracetamol and codeine. | 14:56:31 |
| kirk: | yes, but it's not always enough | 14:56:35 |
| kirk: | I use codeine for big pain | 14:56:40 |
| Cristyn: | Hi Sieve | 14:56:40 |
| claret: | Hi all. I wasn't told about anti-inflammatories. Aspirin yes, but nothing else. This concerns me slightly as I regularly take Ibruprofen for back pain. | 14:56:48 |
| kirk: | you should be very careful about it | 14:56:59 |
| kirk: | I would actually say "stop taking it", but I'm not a doctor... | 14:57:09 |
| Cristyn: | What does it actually do? | 14:57:12 |
| Cristyn: | Sorry if I sound thick! | 14:57:21 |
| kirk: | all anti-inflammatories thin the blood, increasing the risk of bleeding | 14:57:22 |
| Cristyn: | ok | 14:57:27 |
| kirk: | the big bleed I had in 2005 was probably due, in part, to my taking aspirin for a few weeks because of back pain | 14:57:41 |
| Cristyn: | I was told that it was only an issue at the time of my angiogram | 14:58:02 |
| claret: | Thanks, I will, perhaps take up Yoga or Pilates rather than just looking for quick fixes when in pain! | 14:58:22 |
| kirk: | it may be for an angiogram, because of the chemicals the inject, but it should be avoided for anyone with a cavernoma | 14:58:27 |
| kirk: | re yoga: avoid postures where your head is lower than the rest of your body | 14:58:43 |
| kirk: | no standing on your head, for example | 14:58:48 |
| Lyn: | My boyfriend keeps nagging me to do either Yoga or meditation to stop me getting overstressed. | 14:59:06 |
| Sieve: | Is anyone else aware of medication induced headache - I was advised to take no more than 8 doses codeine a month | 14:59:17 |
| kirk: | meditation can be very helpful | 14:59:34 |
| kirk: | I wrote an article about meditation in the AA US newsletter a couple of years ago | 14:59:50 |
| Cristyn: | Yes my doctor told me about that when I complained of headaches just after the bleed. He told me that sometimes the cure makes it worse! | 14:59:54 |
| kirk: | maybe someone can find the link and post it on the web site here... | 15:00:03 |
| kirk: | 8 doses of codeine a month? I've never heard that | 15:00:15 |
| Cristyn: | That would be interesting to read, thanks. | 15:00:21 |
| Lyn: | Anyone heard of Mindfullness? Any feedback? | 15:00:36 |
| Cristyn: | Sorry, no. | 15:00:43 |
| kirk: | mindfulness in what way? as a type of meditation? | 15:00:49 |
| pinhead: | me neither | 15:00:55 |
| Lyn: | It is a type of meditation. | 15:01:27 |
| claret: | Is the Cavernoma so fragile that standing on ones head could induce a bleed? The neurologists implied that bleeds were spontaneous, but it makes me wonder. Any thoughts | 15:01:38 |
| kirk: | it's a great way of learning to meditate, and hence reduce stress | 15:01:46 |
| Lyn: | Someone lent me a book on it...which I still haven't read, but she recommended it for me. | 15:01:59 |
| kirk: | well, I'm convinced I had a bleed once from repeatedly hanging from my feet to stretch my back | 15:02:08 |
| kirk: | and I once had new symptoms after spending an hour at my dentist's with my head below the rest of my body | 15:02:32 |
| Lyn: | My bleed happened after some very vigourous sessions at the gym and stress with exams. | 15:02:41 |
| kirk: | it's generally considered to be a bad idea | 15:02:41 |
| pinhead: | i feel stress plays a big part in a "bleed".What do others think | 15:03:07 |
| Lyn: | My neurologist said there was no connection, however, I am not convinced at all. | 15:03:16 |
| claret: | You can get guided meditation tapes from a variety of sources if you can't get to classes. However it is quite useful to go to a few classes to be taught some of the basics. | 15:03:19 |
| kirk: | this person has written several good books on mindfulness meditation: http://en.wikipedia.org/wiki/Jon_Kabat-Zinn | 15:03:20 |
| Cristyn: | It's taken so long for me to get any answers I'm still not sure what caused my bleed. | 15:03:27 |
| TallPaul: | Heh, my bleed happened after living on aspirin for a week and then drinking a lot. I'm a bad man  | 15:03:37 |
| kirk: | it may be a combination of several factors | 15:03:38 |
| Lyn: | Thanks Kirk, I will have a look later. | 15:03:44 |
| kirk: | for me, the big bleed I had was probably part aspirin, part stress | 15:03:47 |
| ianstu: | claret - see the video of Awad on our site - he addresses the issue | 15:03:49 |
| kirk: | others have said that stress is a factor | 15:03:57 |
| kirk: | but I'd been more stressed in the past and not had bleeds, so it's hard to tell | 15:04:08 |
| Lyn: | Re TallPaul, could alcohol be a factor?? | 15:04:18 |
| Lyn: | ....please say no! | 15:04:25 |
| TallPaul: | Stress, oh yes, and that: my MD was having a nervous breakdown at the time so I was trying to cope with that and run the company | 15:04:29 |
| kirk: | it's said that if you have a couple of drinks, there's no risk | 15:04:30 |
| Cristyn: | Hope not! | 15:04:33 |
| kirk: | but a lot of drinks would have an effect on clotting | 15:04:52 |
| TallPaul: | Whereas I'd had ... errr ... a few more than than. | 15:04:58 |
| kirk: | lol | 15:05:03 |
| TallPaul: | I blame the sloe gin | 15:05:18 |
| ianstu: | lol | 15:05:33 |
| Cristyn: | We'll avoid that, then! lol | 15:05:34 |
| TallPaul: | I have to avoid all alcohol now: anti seizure meds mean little or no booze  | 15:06:05 |
| kirk: | however, the combination of aspirin and alcohol could multiply the effect of the aspirin | 15:06:09 |
| kirk: | yes, seizure meds and alcohol aren't a good combination | 15:06:25 |
| ianstu: | me too | 15:06:26 |
| TallPaul: | On the plus side I can now get vaguely pissed on a pint so I'm cheap to take out | 15:06:27 |
| kirk: | exactly - that's the benefit of the seizure meds | 15:06:44 |
| TallPaul: | Hmmm ... | 15:06:52 |
| ianstu: | lol | 15:06:52 |
| claret: | But why then, why not after another serious drinking session. Surely these are all just tipping points once a bleed is imminent? | 15:07:00 |
| Sieve: | yes - its cheaper to have a good time ! | 15:07:06 |
| Cristyn: | I've just been checked out for epilepsy as I can't cope with flickering lights or fast moving pictures, but it came back normal. Whew. | 15:07:07 |
| kirk: | claret - I wish we knew | 15:07:14 |
| kirk: | it seems to be a combination of several factors, and the doctors just don't know | 15:07:33 |
| : | Slowhand joins General Chat | 15:08:04 |
| Cristyn: | Hi Slowhand | 15:08:11 |
| TallPaul: | Yup. After all I'd been drinking since I was this high [FX: indicates] without coming to any great harm. But a combination of that, aspirin, stress, plus been of the right age ... | 15:08:20 |
| pinhead: | hi slowhand | 15:08:26 |
| TallPaul: | 42 is a pretty classic age for first bleed | 15:08:31 |
| ianstu: | in Brain Awarness Week CA UK hope to have Mr. McEvoy, neurosurgeon | 15:08:47 |
| kirk: | yes, it seems that around 40 is pretty much par for the course, if you haven't had bleeds in childhood | 15:08:49 |
| Cristyn: | I was 35. | 15:09:03 |
| ianstu: | hi slowhand | 15:09:09 |
| Lyn: | I was 42. | 15:09:11 |
| claret: | I wish we knew too. | 15:09:14 |
| TallPaul: | Early starter | 15:09:15 |
| Sieve: | I thought it was slightly younger - 30s? I was 30 | 15:09:21 |
| ianstu: | i was 26 | 15:09:28 |
| Cristyn: | That is young, isn't it? | 15:09:40 |
| kirk: | I think that statistically, there are more around 40, but those are just averages | 15:09:44 |
| ianstu: | no | 15:09:46 |
| pippa: | my son was 9 months old | 15:09:47 |
| kirk: | yes, for kids it's different | 15:09:58 |
| ianstu: | its peak is 20-40 | 15:10:02 |
| Cristyn: | Oh that's awful. | 15:10:03 |
| Cristyn: | I'm sorry to hear that. | 15:10:31 |
| kirk: | so what questions does anyone have? | 15:10:43 |
| ianstu: | tas | 15:10:44 |
| kirk: | feel free | 15:10:44 |
| ianstu: | thank you | 15:10:57 |
| pinhead: | I was dignosed in my 60's but the Neuro said I had suffered several bleeds in my life that hadn't caused any problems | 15:11:15 |
| kirk: | yes, many of us have probably had bleeds before being diagnosed | 15:11:36 |
| kirk: | I know I did | 15:11:37 |
| kirk: | you are just told that you're stressed, or tired, or whatever | 15:11:50 |
| Cristyn: | How can they tell it's more than one bleed? | 15:11:54 |
| kirk: | unless you have clear neurological symptoms | 15:11:58 |
| kirk: | by your history - I remember two incidents before my cavernomas were discovered that were similar | 15:12:15 |
| Cristyn: | I was told that an old bleed can't be identified as to when it happened. | 15:12:24 |
| kirk: | which, after the fact, I knew were most likely bleeds | 15:12:28 |
| kirk: | no | 15:12:30 |
| Cristyn: | Ok. So it's spot the symptoms? | 15:12:39 |
| kirk: | however, if you have multiples, and one bleeds, they can look at an MRI and see if there is blood around others | 15:12:48 |
| claret: | I was told that I would know if I had had previous bleeds due to symptoms, yet I had not experience any previous to my 'first' bleed. | 15:12:54 |
| kirk: | symptoms can be very different | 15:13:03 |
| ianstu: | Cristyn - 20% of cavernomas are in children | 15:13:09 |
| kirk: | you may have a bleed with very mild symptoms | 15:13:11 |
| Cristyn: | No, it was nothing like I'd ever experienced before. | 15:13:13 |
| kirk: | but you may have had a very small bleed without knowing in the past | 15:13:38 |
| Cristyn: | That must be terrifying. It was hard enough as an adult. | 15:13:44 |
| pinhead: | after my MRI I was told it had bled several times before.never thought to ask how he knew | 15:13:53 |
| ianstu: | yes | 15:13:54 |
| kirk: | one way to tell is to look at the amount of hemosiderin (blood product that remains in the brain) and the amount of new blood | 15:14:23 |
| Cristyn: | My husband seems to be finding it hard to come to terms with. | 15:14:31 |
| kirk: | in my case, for example, my neuro once told me that I had a lot of hemosiderin, which suggested multiple bleeds | 15:14:41 |
| Cristyn: | Does anyone else find that? | 15:14:44 |
| TallPaul: | Yup, my wife had PTSD | 15:14:54 |
| kirk: | in other cases, they compare a CT scan, which shows new blood clearly, and an MRI which shows hemosiderin | 15:15:01 |
| TallPaul: | cos she was there when I had the bleed | 15:15:06 |
| kirk: | coping: yes, it's very difficult for many people | 15:15:12 |
| TallPaul: | ended up having CBT to "fix" it. | 15:15:19 |
| ianstu: | what's that TP:? | 15:15:20 |
| TallPaul: | Which it did. | 15:15:25 |
| pinhead: | thanks Kirk now I understand | 15:15:27 |
| TallPaul: | Post Truaumatic Stress Disorder | 15:15:34 |
| Sieve: | Yes my wife has found it hard to cope with - verging on PSTD | 15:15:36 |
| Cristyn: | He keeps trying to wrap me in cotton wool, which doesn't go down well  | 15:15:37 |
| ianstu: | ta | 15:15:41 |
| kirk: | yea | 15:15:42 |
| TallPaul: | That's the one | 15:15:43 |
| TallPaul: | Been there, done that | 15:15:59 |
| kirk: | the difficulty, in my opinion, is the fact that we may think of cavernomas as "time bombs" | 15:16:04 |
| Cristyn: | My daughter also struggled at first. She wanted her old mummy back. That was a bad day. | 15:16:14 |
| kirk: | whereas it's really not sure they'll ever bleed again, or, if so, how much | 15:16:17 |
| Cristyn: | Time bomb about sums it up. | 15:16:29 |
| kirk: | then for people who have deficits, you need to get used to the new you | 15:16:39 |
| kirk: | yes, but they don't have to be time bombs | 15:16:47 |
| Lyn: | When I spoke to Dr Bertalanffy last year at the AGM, he said sometimes a Cavernoma can calcify and not bleed again, have you heard this Kirk? | 15:16:50 |
| kirk: | be careful - no blood thinners, no bungee jumping - and your risk is much lower | 15:17:00 |
| kirk: | yes, calcification can occur | 15:17:09 |
| kirk: | I don't know what the likliehood of that is however | 15:17:18 |
| Cristyn: | I had tests with a neuropsych, who told me I had to grieve for the old me and then I could accept it. | 15:17:24 |
| kirk: | interesting | 15:17:34 |
| claret: | I recently got in touch with the organisation Headway who can offer up to 12 weeks of free counselling to people with acquired Brain injuries. | 15:17:35 |
| Cristyn: | It does help to know that you can reduce the risks. | 15:17:36 |
| Sieve: | I've been given a 50-70% chance of another catastrophic event so difficult to plan for | 15:17:38 |
| kirk: | how did the doctor say he determined the odds? | 15:17:53 |
| ianstu: | great Claret | 15:18:01 |
| Cristyn: | My doctor just told me not to worry | 15:18:05 |
| kirk: | because from what I understand, there's pretty much no way to know | 15:18:06 |
| Cristyn: | Which isn't easy! | 15:18:23 |
| kirk: | the only odds are statistical, that there's X percent of a chance of a rebleed per year | 15:18:24 |
| TallPaul: | yup I've seen all sorts of odds stated | 15:18:31 |
| Lyn: | I went to Life Changes for counselling and it helped. | 15:18:34 |
| kirk: | but I've never heard a valid reason to say, for example, 50% chance of catastrophic bleed | 15:18:42 |
| kirk: | one thing to point out: | 15:18:46 |
| kirk: | I've been told that some cavernomas are aggressive, ie they will bleed often, though usually small bleeds | 15:19:03 |
| Sieve: | up to 5% per cavernoma per year | 15:19:08 |
| Cristyn: | I know that brainstem cavernomas are more likely to bleed again, but are all other areas roughly as likely? | 15:19:10 |
| kirk: | others are pretty much just one-bleeders | 15:19:10 |
| kirk: | so it depends on the person | 15:19:16 |
| kirk: | I happen to be in the aggressive case, having had several small bleeds since my big one | 15:19:30 |
| kirk: | brainstem CAs - I've never heard that | 15:19:47 |
| ianstu: | noy sure about that Cristyn | 15:19:48 |
| Cristyn: | ok | 15:19:55 |
| claret: | http://www.headway.org.uk/home.aspx | 15:20:11 |
| Cristyn: | Sorry, I probably got that wrong then - I thought I'd read that somewhere here. | 15:20:22 |
| claret: | What is Life Changes? | 15:20:28 |
| Cristyn: | Thanks Claret | 15:20:30 |
| kirk: | one advantage to brainstem CAs, however, is that we don't get seizures | 15:20:35 |
| kirk: | or, at least, they are _very_ rare | 15:20:41 |
| ianstu: | hooray | 15:20:47 |
| kirk: | lol | 15:20:51 |
| kirk: | on the other hand, brainstem bleeds can be more dangerous | 15:21:20 |
| kirk: | and can lead to more defecits | 15:21:31 |
| claret: | It seems it is hard to find an upside if you are a realist! | 15:21:57 |
| Lyn: | It was a charitable organisation recommended by my doctor for Counselling, when I was suffering from depression due to not being able to come to terms with my Cavernoma. | 15:21:58 |
| claret: | Thanks Lyn I will check it out. | 15:22:25 |
| jo: | Im back! | 15:22:27 |
| Cristyn: | hi again | 15:22:37 |
| Sieve: | Yep - its the seizures which are the main worry for my wife - can't tell where or when and many years in between | 15:23:04 |
| pinhead: | hi again Jo | 15:23:17 |
| jo: | Anyone know anything about likelihood of CA in spine if you have multiples? | 15:23:21 |
| kirk: | I guess seizures must be very stressful | 15:23:22 |
| claret: | Are you Southampton based? Did you come to the Southampton hub? | 15:23:25 |
| kirk: | spine - I don't know, but they seem to be quite rare overall | 15:23:39 |
| ianstu: | claret - no one came! | 15:23:51 |
| kirk: | this said, my neuro is having me do a spinal MRI next year (I did one 5 years ago) | 15:23:52 |
| kirk: | he wants me to check every 5 years or so, so he thinks there is a possibility | 15:24:05 |
| Lyn: | I am from Southampton and did go. | 15:24:12 |
| Cristyn: | The risk of hemorrhage from a cavernoma is somewhere between 0.5-1% per year. It may be greater (or at least easier felt symptomatically) in cavernomas located in more "eloquent" brain such as the basal ganglia, thalamus, brainstem, and spinal cord. According to literature I've read. Not that I understand half of it! | 15:24:21 |
| claret: | The neurologist said they are extremely rare even with multiples. | 15:24:28 |
| Lyn: | Yes I did Ian .. you fibber. | 15:24:35 |
| jo: | Did your last MRI show nothing in your spine Kirk? | 15:24:41 |
| kirk: | no, nothing | 15:24:46 |
| ianstu: | sorry | 15:24:47 |
| kirk: | however, I have a hemangioma (similar to a cavernoma) in a vertebra | 15:24:57 |
| ianstu: | | 15:25:04 |
| Lyn: | I should think so . | 15:25:04 |
| kirk: | apparently they are more common than cavernomas | 15:25:05 |
| claret: | Er not true Ian, Lyn, Eliza and I did! | 15:25:18 |
| ianstu: | 3 | 15:25:28 |
| Cristyn: | I would like to attend a hub, but the Bristol was had been and gone when I joined. | 15:25:38 |
| Cristyn: | Maybe this year! | 15:25:45 |
| ianstu: | maybe | 15:25:54 |
| jo: | Think the whole % risk thing is quite difficult to measure and can't really apply it to your own individual case | 15:26:46 |
| Cristyn: | Sorry fot the typo. I often use the wrong word. Usually I spell check etc. Missed that. | 15:26:47 |
| claret: | I found it extremely useful and informative. I especially found it useful to talk to others who had struggled through similar experience of coming to terms with their bleeds. | 15:26:57 |
| kirk: | the % risk is not a firm number | 15:27:05 |
| kirk: | frankly, they just don't know yet | 15:27:13 |
| ianstu: | | 15:27:14 |
| : | corry joins General Chat | 15:27:15 |
| pinhead: | hi corry | 15:27:48 |
| jo: | Hi Corry | 15:27:57 |
| Cristyn: | It's really helped here. Otherwise, I'd still be totally in the dark. It helped with my daughter and the Anapahylaxis Campaign too. I think it always helps to know you're not alone. | 15:28:05 |
| Cristyn: | Hi Corry | 15:28:08 |
| claret: | 3 very important people - and yourself of course. It's not about quantity in life but quality. But I disgress! | 15:28:11 |
| kirk: | | 15:28:22 |
| corry: | hi | 15:28:25 |
| ianstu: | true | 15:28:28 |
| Lyn: | I have reduced my hours at work, no longer go for 90 minute sessions at the gym, so hopefully I have cut the % risk down for my own individual case. Shame it can't be confirmed. | 15:28:53 |
| Sieve: | There are lots of %ages talked about but its really difficult to work out when the next event will be - 1% per year means 3.6 possible days | 15:29:14 |
| claret: | However I think that it is important to think about how as a group we can support and inform new members beyond what already usefully exists through the Alliance. Any ideas? | 15:30:05 |
| kirk: | well, for support, there are things like this, or the Angioma Alliance forum | 15:30:25 |
| ianstu: | great Claret | 15:30:29 |
| kirk: | as for the rest, it's first and foremost about informing doctors, I think - Ian? | 15:30:40 |
| jo: | Could we not get a forum going like the Us one? | 15:30:50 |
| kirk: | is there any use in having a separate forum? | 15:31:00 |
| : | almeriawoman joins General Chat | 15:31:06 |
| Cristyn: | I think that would help. My GP had never heard of them and therefore didn't know about aspirin, etc. | 15:31:09 |
| jo: | I find that helpful and wouldbe even better for UK m,e,bers asd we may have experience of the same doctors | 15:31:14 |
| Lyn: | I agree. | 15:31:27 |
| Cristyn: | Hi almeriawoman | 15:31:35 |
| jo: | Anyone seen Neil Kitchen. Thought he was really helpfukl | 15:31:38 |
| kirk: | there is a UK-specific forum on the Angioma Alliance forum site | 15:31:47 |
| claret: | I think that it is really important to take care of your health and well-being after a bleed, but not to become too obsessed with the what if scenarios. But as was pointed out avoid bungee jumps. | 15:31:53 |
| kirk: | where you can ask questions more specific to UK or NHS issues | 15:31:56 |
| Cristyn: | I think a leaflet or smemthing would be useful for employers. | 15:32:00 |
| kirk: | but the forum itself is better to group as many people as possible | 15:32:11 |
| kirk: | for employers? hmmm | 15:32:19 |
| kirk: | you mean because your employer knows you have a cavernoma? i | 15:32:29 |
| jo: | Kirk yes there is but no one ever goes on it | 15:32:31 |
| kirk: | in that case, the general leaflet could be used, no? | 15:32:36 |
| kirk: | that would give them information | 15:32:48 |
| Cristyn: | To explain why you may have problems and also that they don't need to look so scared and think you are a liability. | 15:32:51 |
| kirk: | yes, it's a good point | 15:32:59 |
| kirk: | but the general Cavernoma Alliance leaflet is probably fine for that | 15:33:08 |
| kirk: | it's anything but alarmist | 15:33:12 |
| Cristyn: | I thought the general leaflet was a) too complicated and b) too much information. Something short and sweet! | 15:33:25 |
| Cristyn: | But then I work in a school and everything is done on the run! | 15:33:38 |
| kirk: | ok, Ian, you hear that? | 15:33:38 |
| kirk: | perhaps it's necessary to think of a simpler leaflet | 15:33:57 |
| kirk: | such as even for spouses, etc | 15:34:02 |
| jo: | I havent told my employer my medical history as I was never asked about it | 15:34:12 |
| kirk: | or other family members | 15:34:13 |
| Cristyn: | No, I didn't think the literature was alarmist, quite the reverse, but my employer went white just at the mention of a brain problem. | 15:34:18 |
| claret: | Yes the CA leaflets provide very concise, easy to digest information. We should all give them to our GPs too. | 15:34:22 |
| kirk: | hmmm | 15:34:24 |
| kirk: | you probably need to reassure your employer - what do you do? | 15:34:36 |
| Cristyn: | I think she expected me to collapse at any moment and that she would have to deal with it. | 15:34:43 |
| Sieve: | The leaflets are spot on for group members Ian! | 15:34:48 |
| kirk: | ah, yes | 15:34:49 |
| kirk: | I think that if you, say, drive a tank or something, then there's cause for worry... | 15:35:03 |
| Cristyn: | I explained that it was not something that was likely to affect me at work, that I knew the symptoms to watch for and that I just needed her to be aware. | 15:35:31 |
| kirk: | however, it might be a Good Thing to have your employer know that if something does happen, what to say to a doctor | 15:35:33 |
| kirk: | or to the hospital | 15:35:36 |
| kirk: | so you're treated correctly | 15:35:42 |
| Cristyn: | exactly | 15:35:49 |
| kirk: | and also know which neuro is following you | 15:36:03 |
| claret: | I found the CA website less alarmist than many I looked at. | 15:36:09 |
| Cristyn: | I found the leaflet invaluable for myself, but my husband refused to read it. | 15:36:16 |
| kirk: | really? | 15:36:23 |
| kirk: | hmm | 15:36:24 |
| almeriawoman: | I thought we had worked on a one page general information sheet that did not go into too many details and also the new business cards give concise info | 15:36:28 |
| claret: | I agree, I think that the information is really clear. | 15:37:00 |
| kirk: | Ian will address that | 15:37:18 |
| pinhead: | what are the business cards | 15:37:19 |
| kirk: | (one-page info) | 15:37:24 |
| ianstu: | yes - im thinking about writing a general lealflet | 15:37:46 |
| kirk: | I'm going to take a brief comfort break | 15:37:46 |
| claret: | I was less scared once I had read the leaflet, it shed some light on things. | 15:37:55 |
| kirk: | would everyone like to take a few minutes? | 15:37:56 |
| kirk: | go to the loo, get a cuppa, whatever? | 15:38:03 |
| pinhead: | good idea | 15:38:14 |
| Cristyn: | My consultant told me to carry the letters from the hospital at all times in case I needed treatment. Yes - the same consultant who said I wouldn't have any more problems! I wondered about carrying something more succing instead, but didn't know what. | 15:38:21 |
| Cristyn: | I felt much less scared after reading the leaflet, but then I'm always happier when I understand. | 15:38:55 |
| pinhead: | does anyone have a medic alert bracelet or neck pendant | 15:39:10 |
| kirk: | ok, we'll take a break now, 5 minutes | 15:39:16 |
| Cristyn: | That was supposed to say succinct | 15:39:20 |
| ianstu: | tell me (offline)d you some | 15:39:20 |
| Lyn: | My boyfriend bought me a medical bracelet with my condition, emergency contact number etc...very romantic! | 15:39:27 |
| claret: | My bleed happened over a number of days, or certainly the symptoms worsened over about 9 days. Have some people have sudden bleeds? | 15:39:32 |
| Cristyn: | I thought about a bracelet. My bleed worsened over about the same period, claret | 15:40:06 |
| claret: | Thanks. | 15:40:30 |
| Cristyn: | I thought I had really bad flu to start with and then eventually my husband thought I had meningitis | 15:41:09 |
| claret: | But at least it shows he cares, but not quite the same impact as diamonds for instance! | 15:41:13 |
| Cristyn: | Spent seven hours in a and e | 15:41:23 |
| Lyn: | I had a metalic taste and slight numbness on my top lip for several days, and then a bad headache and then wham! | 15:41:26 |
| ianstu: | pinhead | 15:41:32 |
| kirk: | sudden bleeds - some have them very suddenly | 15:42:55 |
| claret: | One of the members at the London Hub said she ordered a bracelet on the net. | 15:42:56 |
| kirk: | in my case, it was over about 5 days before it got serious | 15:43:05 |
| kirk: | it started with a headache an nausea, and 4 days later my whole right side became suddenly numb | 15:43:29 |
| claret: | The sudden thing scares me, no warning.... | 15:43:51 |
| Cristyn: | I was told that it was unlikely to be sudden in my case. | 15:44:12 |
| ianstu: | tell me your address offline andi will send you some cards | 15:44:20 |
| claret: | How can they determine that? | 15:44:37 |
| Cristyn: | Who knows? | 15:44:45 |
| Cristyn: | I don't | 15:44:48 |
| Lyn: | Aren't AVMs sudden? | 15:45:07 |
| Cristyn: | The cards sound useful. I didn't know about those. | 15:45:08 |
| kirk: | I don't know how a doctor can say whether a bleed could be sudden or not, or the percentage of likliehood of a new bleed | 15:45:17 |
| kirk: | I don't know about AVMs | 15:45:23 |
| claret: | Some of the information we are given seems a bit random I find. | 15:45:25 |
| kirk: | yes, because many neuros don't know a lot about cavernomas | 15:45:43 |
| kirk: | hence the need for the leaflets | 15:45:52 |
| Cristyn: | AVms are sudden. Or at least that's what I was told - they thought that's what I had at first. | 15:45:59 |
| kirk: | Ian wants everyone to know that he didn't quit, but he's having problems with his computer... | 15:46:04 |
| kirk: | I know aneurisms are sudden | 15:46:17 |
| Cristyn: | That's what computers are for | 15:46:20 |
| kirk: | but I don't know anything about AVMs | 15:46:22 |
| Lyn: | I believe AVMs are more dangerous as they are sudden big bleeds, however, they can treated. I was also told this is what I had originally. | 15:46:26 |
| kirk: | yes, remember that cavernomas generally bleed slowly | 15:46:40 |
| Cristyn: | The good news | 15:46:52 |
| kirk: | AVMs would be more likely to bleed a lot, because they involve arteries | 15:46:55 |
| kirk: | cavernomas usually just ooze; the bleeding is rarely that of a broken vessel, or if it is, it's small | 15:47:12 |
| kirk: | being capillary in nature | 15:47:17 |
| jo: | Cavernomas ooze dont they and remain localized | 15:47:26 |
| claret: | Thank you Kirk i find that somehow reassuring. | 15:47:32 |
| jo: | sorry Kirk you got there before me | 15:47:33 |
| kirk: | generally, yes | 15:47:35 |
| kirk: | there are, of course, always exceptions... | 15:47:41 |
| kirk: | to be honest, I've rarely heard, in the 4+ years since mine were found, of someone dying from a bleed | 15:48:08 |
| Cristyn: | which gives us time, I was told. That's why they won't operate on mine - because the risks of damage are higher if they do. If it re-bleeds they'll reconsider. | 15:48:09 |
| kirk: | I know it happens occasionally, but it's quite rare | 15:48:19 |
| jo: | I think the whole surgery thing scares me and I have been extremely ill with my bleeds. Still surgery is radical.... | 15:48:51 |
| kirk: | surgery is scary, but from what I've seen since I've been around this, most people do quite well after surgery | 15:49:21 |
| ianstu: | i saw Mr K jo | 15:49:29 |
| kirk: | it involves a long time to recover in many cases, especially for brainstem surgery | 15:49:37 |
| jo: | Yes longer than it takes to recover from your bleed? I had a large pons bleed in 2006 | 15:50:04 |
| kirk: | it really depends on each case | 15:50:26 |
| jo: | Ian Mr K gave me a whole new slant on things. | 15:50:33 |
| ianstu: | yes | 15:50:41 |
| ianstu: | he is to be trusted | 15:50:54 |
| jo: | But in general surgery will make you just as ill as your bleed? | 15:50:58 |
| jo: | My original neuro suggested I was rare and weird and there was threat to my life. Mr K helped me see things another way | 15:51:34 |
| Sieve: | Mr K was doing some assessment of what treatments were commonly used by neuros in the Uk - does anyone know if he has completed this yet? | 15:51:49 |
| Cristyn: | thank goodness someone did | 15:51:51 |
| ianstu: | great | 15:51:52 |
| kirk: | surgery has issues in all cases, but it may help in the long run | 15:51:53 |
| kirk: | it's a very complex question, and depends on each specific case | 15:52:01 |
| jo: | Because to the average neuro you are rare but to Mr K who gets many cases referred to him, you are not | 15:52:11 |
| kirk: | exactly | 15:52:21 |
| kirk: | hence the need to see a neuro who really knows cavernomas | 15:52:34 |
| jo: | I feel the sum of knowledge will increase enormously over the next 10 years and forums like this help to share and build on what is known | 15:53:49 |
| ianstu: | yes | 15:54:19 |
| kirk: | there is a fair amount of research right now, something that, even four years ago when I first got involved, was just nascent | 15:54:30 |
| kirk: | a lot of it is due to Connie Lee's efforts in the US | 15:54:52 |
| kirk: | and Ian's work in the UK | 15:54:55 |
| kirk: | getting the researchers and doctors together | 15:55:02 |
| Sieve: | We just need to get out there to the neuro units to make new patients aware of the alliance | 15:55:04 |
| kirk: | organizing conferences | 15:55:05 |
| ianstu: | but CA ukS PROBLEM is that we are nnot recognised by the NHS | 15:55:28 |
| kirk: | yes, the new patient thing is an important issue- I don't know how you would do that though | 15:55:30 |
| Sieve: | How do we get recognised? | 15:55:57 |
| claret: | Hi back again. I think we can all support the work that CA and Ian is doing by educating our GPs and Neurologists/Neurosurgeons, but it feels like a long road. | 15:56:42 |
| ianstu: | takes time | 15:56:51 |
| claret: | Why is the Alliance not recognised by the NHS? | 15:57:21 |
| ianstu: | GPs should know of us | 15:57:36 |
| ianstu: | it will be | 15:57:52 |
| claret: | Not the two GPs I saw. | 15:58:05 |
| Cristyn: | Perhaps if the consultants could be persuaded to have leaflets, it might help. I got my results in a letter which just said we need to see you, we've found a cavernoma. My response was "huh?" | 15:58:42 |
| claret: | But that does not reflect your effort, rather their ignorance on the subject. One was keen to know more and have the CA leaflets. | 15:58:56 |
| Cristyn: | My GP hadn't heard of cavernoma, never mind the alliance | 15:59:07 |
| Cristyn: | Is it really that rare? | 15:59:39 |
| claret: | When I say the Neurologist in hospital he told me to look up Cavernoma on the internet! Not very useful at the time. | 15:59:44 |
| Sieve: | Mine neither - he has all the leaflets now though - apparently I am his only patient with CA | 15:59:48 |
| ianstu: | not rare | 15:59:54 |
| kirk: | many people will find they're the only one | 15:59:59 |
| kirk: | not rare, but not diagnosed correctly in many cases | 16:00:07 |
| Cristyn: | I didn't think so | 16:00:15 |
| kirk: | the neuro I see has only one other patients with cavernomas | 16:00:21 |
| kirk: | fortunately, he had the other patient before me | 16:00:31 |
| ianstu: | kirk is correct | 16:00:37 |
| kirk: | so he knows a lot | 16:00:37 |
| Cristyn: | really? I'm quite surprised. | 16:00:38 |
| kirk: | surprised by..? | 16:00:51 |
| kirk: | the rare bit or the mis-diagnosis? | 16:00:57 |
| Cristyn: | That there are so few patients per consultant. | 16:01:09 |
| kirk: | ah, yes | 16:01:15 |
| kirk: | my neuro works in an office with two other neuros | 16:01:26 |
| kirk: | between the three of them, they see one or two new cases per year | 16:01:36 |
| Cristyn: | As for mis diagnosis, it took me 18 months and two consultants to get diagnosed | 16:01:36 |
| Cristyn: | so no! | 16:01:47 |
| kirk: | again, a lot of cavernomas are misdiagnosed, doctors think that it's depression, MS, or anything else | 16:01:52 |
| kirk: | unless they order an MRI | 16:01:55 |
| Cristyn: | I had an mri and she missed it | 16:02:06 |
| kirk: | my GP immediately thought of MS, given the symptoms, and ordered an MRI | 16:02:14 |
| ianstu: | Cristyn have you read the dt syory? | 16:02:16 |
| Cristyn: | dt? | 16:02:24 |
| kirk: | Daily Telegraph | 16:02:32 |
| Cristyn: | no | 16:02:35 |
| kirk: | where doctors didn't spot a cavernoma | 16:02:38 |
| ianstu: | daily telegraph | 16:02:39 |
| Lyn: | I have....now that was bad! | 16:02:49 |
| ianstu: | on the siye | 16:02:51 |
| kirk: | site | 16:03:02 |
| Cristyn: | No I haven't read it | 16:03:03 |
| Cristyn: | but I will! | 16:03:10 |
| ianstu: | read it | 16:03:12 |
| ianstu: | great | 16:03:20 |
| kirk: | I think one factor may be the age of the doctors - younger ones are more likely to know about cavernomas | 16:03:30 |
| kirk: | because they learn about them in med school now | 16:03:38 |
| Cristyn: | wow, that's a scary story | 16:04:44 |
| ianstu: | yes it was | 16:04:53 |
| Cristyn: | my doctor had prepared me to go for laser treatment for an avm and then said she couldn't find a cause. | 16:05:17 |
| TallPaul: | http://www.cavernoma.org.uk/opus193.html has links if anyone else has not read the story yet | 16:05:23 |
| claret: | How young? My doctor is in her 30's or early 40's. And yes 18 months is an astoundingly long time. | 16:05:28 |
| Cristyn: | I asked to be re referred | 16:05:32 |
| ianstu: | thanks tall paul | 16:05:45 |
| Cristyn: | He found it by reviewing the mri almost immediately | 16:05:57 |
| kirk: | I don't know, I have heard that many younger doctors know more; though it really depends on the age, and where they go to school | 16:05:59 |
| kirk: | and how much they slept through their neurology classes... | 16:06:07 |
| Cristyn: | lol | 16:06:15 |
| ianstu: | lol | 16:06:16 |
| kirk: | no more questions? | 16:09:23 |
| kirk: | Ian seems to think that it's gotten quite because it's tea time... | 16:09:33 |
| Cristyn: | Thank you for organising this chat guys - it's been very interesting | 16:09:39 |
| kirk: | you're welcome | 16:09:50 |
| Sieve: | Yes thanks very much | 16:09:53 |
| Lyn: | We are all waiting for our sticky buns! | 16:09:57 |
| pinhead: | yes thank you.really interesting | 16:10:00 |
| ianstu: | we have 20 minutes | 16:10:01 |
| Cristyn: | I have to feed my kiddies now, but I have really appreciated it. | 16:10:05 |
| kirk: | I don't get sticky buns... | 16:10:05 |
| Cristyn: | Bye | 16:10:22 |
| : | jane joins General Chat | 16:10:27 |
| ianstu: | kirk and i will be around for 20 mins | 16:10:56 |
| Lyn: | We always have them at the hubs. | 16:10:58 |
| kirk: | as Ian said, we still have time if there are any more questions | 16:11:00 |
| ianstu: | hi jane | 16:11:20 |
| Lyn: | I think you scared her off Ian! | 16:12:05 |
| ianstu: | not me | 16:12:15 |
| ianstu: | talk folk | 16:13:32 |
| claret: | Yes it is a great idea, thank you both for organising it. Are you planning to do them regularly? It is also a great distraction from New Years clearout and furniture rearranging. | 16:13:37 |
| Sieve: | didn't intent to quit | 16:13:50 |
| ianstu: | great steve | 16:14:05 |
| kirk: | furniture rearranging? is that a British passtime like trainspotting or something? | 16:14:07 |
| ianstu: | lol | 16:14:14 |
| claret: | Perhaps 2 hours is quite a long time. Having problems concentrating for so long. | 16:14:34 |
| ianstu: | yes | 16:14:44 |
| Sieve: | Do many people have difficulty with concentration? | 16:15:13 |
| ianstu: | maybe we will have it for 1 hour in future | 16:15:31 |
| kirk: | when I'm tired, yes | 16:15:32 |
| claret: | No, less geeky. It involves putting things in the middle of the room and then putting them back in different places! | 16:15:32 |
| kirk: | it seems to be a common symtom | 16:15:39 |
| Lyn: | Kirk, we cut out an article saying that the National Hospital for Neurology and Neurosurgery in London has studied Oxygen treatment for Cluster headaches. Could there be an application for Cavernomas? | 16:15:41 |
| kirk: | Lyn, I have no idea | 16:15:55 |
| kirk: | I don't see how, though, because cavernomas are "mechanical" | 16:16:10 |
| kirk: | in the sense that they are malformation | 16:16:15 |
| claret: | I think that 1 hour would be good. | 16:16:15 |
| Sieve: | Lyn that sounds interesting - do you know which neurologist was involved? | 16:16:39 |
| ianstu: | 1.5 hours in February | 16:17:07 |
| pinhead: | that sounds perfect | 16:17:28 |
| Lyn: | Apparently oxygen causes a drop in blood flow meaning less enlarged blood vessels and less pressure on nerves in the brain. | 16:17:31 |
| kirk: | perhaps, but I don't see that as being useful unless you know you're about to have a bleed | 16:17:55 |
| Lyn: | Sieve, it just mentions "researchers" at the hospital. | 16:17:57 |
| kirk: | however, maybe it's something they could use when you go in after a bleed to keep it from getting worse | 16:18:09 |
| Lyn: | I guess that is true. | 16:18:19 |
| kirk: | I've actually never heard of any post-bleed treatments other than steroids | 16:18:28 |
| ianstu: | pinhead - offline i could send you cards | 16:18:30 |
| kirk: | such as, say, nitroglyrecin, which relaxes blood vessels | 16:18:41 |
| kirk: | my guess is that since cavernomas are capillaries, such drugs might not have any effect | 16:18:57 |
| pinhead: | thanks Ian.where shall i send my address to | 16:19:15 |
| ianstu: | info | 16:19:24 |
| pinhead: | ok.will do | 16:19:40 |
| ianstu: | @cavernoma.org.uk | 16:19:41 |
| ianstu: | ta | 16:19:48 |
| claret: | What about diet. Are there any foods that can strengthen the blood vessels? It is a long shot, but was thinking about getting some nutritional advice. | 16:21:14 |
| ianstu: | ?s from Pippa | 16:21:21 |
| kirk: | that's a question with no firm answer | 16:21:27 |
| kirk: | there are all sorts of things that _may_ be helpful, but probably the best advice is to eat lots of fruits and veggies | 16:21:50 |
| ianstu: | ?s to Kirk | 16:21:59 |
| kirk: | because you never know from all the studies if anything really has an effect | 16:22:07 |
| claret: | Back to the whole Ibruprofen issue, is there any information on it? And any thoughts about coffee? | 16:22:10 |
| kirk: | they do say that green tea might help, but who knows? | 16:22:15 |
| kirk: | coffee is fine, I'm told | 16:22:20 |
| kirk: | ibuprofen is not - just look up on Google, ibuprofen blood thinner | 16:22:34 |
| claret: | Why green tea? | 16:22:43 |
| kirk: | Ian tells me that some neurologists think that caffeine is bad... | 16:22:53 |
| Lyn: | I am still reeling from the Ibruprofen issue, I was told by my GP it was fine, however Aspirin a big no! | 16:22:58 |
| kirk: | green tea may have something that helps blood vessels stay strong | 16:23:06 |
| kirk: | but it's just a guess | 16:23:11 |
| kirk: | yea, I'm surprised you were told it's ok (ibuprofen) | 16:23:24 |
| claret: | Thank Kirk will do. Yes had heard mixed things about Coffee. | 16:23:24 |
| kirk: | because it's one of the basic dangerous things for us; any anti-inflammatory | 16:23:37 |
| ianstu: | isn't it all just guesswork? | 16:23:40 |
| kirk: | however, I am told that celebrex is safe, at least regarding blood thinning | 16:23:49 |
| kirk: | but I wouldn't take it regularly | 16:23:54 |
| kirk: | because of other issues | 16:23:58 |
| kirk: | yes, ian is right, a lot of this is guesswork until they really find things out | 16:24:15 |
| kirk: | the blood thinning thing is actually not proven as such to cause bleeds; but many of us have had bleeds when taking aspirin or other such meds | 16:24:52 |
| Sieve: | Do members have blood pressure checked regularly? Surely this must be a factor? | 16:24:53 |
| kirk: | and doctors strongly recommend avoiding any blood thinners | 16:25:04 |
| pinhead: | when you have arthritis as well it's hard to know what to take for the pain | 16:25:13 |
| kirk: | re blood pressure: some say it's a factor, others don't | 16:25:13 |
| kirk: | since we are dealing with capillaries, they aren't really affected by blood pressure | 16:25:26 |
| ianstu: | we have 5 mins. so any other ?s | 16:25:31 |
| kirk: | however, it's probably best for overall health to check it | 16:25:36 |
| kirk: | pain: yes, it sucks | 16:25:41 |
| kirk: | I have chronic back pain, and have found that neurontin helps, so I take that three times a day | 16:25:57 |
| pinhead: | what is neurontin Kirk | 16:26:30 |
| kirk: | an anti-epileptic medication; also known by its generic name gabapentin | 16:26:50 |
| claret: | I have quite normal blood pressure, and if anything it was on the low side around when I had my bleed. | 16:26:52 |
| kirk: | used for seizures, but also neurological pain | 16:26:59 |
| pinhead: | thanks Kirk | 16:27:18 |
| ianstu: | let me ask, when is best for a chat? | 16:27:24 |
| Sieve: | Sat afternoon is a good time | 16:27:53 |
| Lyn: | Claret, I have always had very low blood pressure. | 16:27:53 |
| pinhead: | a Saturday afternoon is probably best for me | 16:27:58 |
| ianstu: | Sat PM | 16:28:04 |
| ianstu: | ? | 16:28:12 |
| ianstu: | ok | 16:28:20 |
| Lyn: | Saturday pm is good for me. | 16:28:23 |
| ianstu: | ok | 16:28:29 |
| claret: | Yes Saturday afternoon is good for me, not so keen on Saturday evening. | 16:28:51 |
| ianstu: | ok | 16:29:08 |
| Lyn: | Down the pub?? | 16:29:14 |
| Sieve: | Thanks all and Bye for now | 16:29:25 |
| pinhead: | thanks a lot Ian and Kirk. Bye | 16:29:27 |
| ianstu: | not kirk | 16:29:30 |
| kirk: | no, I can't get to the pub | 16:29:39 |
| kirk: | a bit too far | 16:29:44 |
| claret: | Thank you all, it was nice to meet you in cyberspace. And not likely down the pub just would like to be! | 16:29:53 |
| Lyn: | It was nice to speak to you all. Thanks Ian and Kirk this has all been really helpful. | 16:30:42 |
| ianstu: | bye you all | 16:31:02 |
| claret: | I suppose it is life after cavernoma - things we would like to do, but no longer can! | 16:31:06 |
| kirk: | ok, everyone, goodbye and thanks for coming | 16:33:13 |
| TallPaul: | I should have the chat archive online shortly - just working on a filter to clean it up a bit | 16:41:43 |
| ianstu: | thanks Paul | 16:42:44 |
