Jump to content

Hi All continued


Guest Jeanette
 Share

Recommended Posts

Guest Jeanette

Just a bit more about myself ....

I had my SAH 5 years ago and had the aneurysm coiled.(I was 46 at the time.) I was on the ISAT trial - given the choice of clipping or being in the trial and randomized for possible coiling. I believe that they have since stopped the trial prematurely because the coiling was seen to be better in most cases.(I think that the results are the same but with coiling being less invasive it is the treatment of choice in cases suitable for it.)

The main problems I am left with are fatigue (I still need 3 hours in bed in an afternoon) and odd eyesight in that I can see o.k. (with specs) but can't read for long at a time.

Off for my 'nap' now will post another instalment later.

By the way- I found the site from the Brain Help site.....well done with it- its very much appreciated (I can see that there must be a huge amount of work involved)

Regards

Jeanette

Link to comment
Share on other sites

Hi Jeanette,

You're doing pretty well for a "novice" on the computer!

Like you, I have dodgy eyesight....have to use reading glasses and some of the print on packaging is so small that I can barely read it with glasses on! My eyesight is still a big problem.

Is this the first time since your SAH, that you've joined a support group?

Well, I will end this here for the minute.......well done you with the computer! Will look forward to reading your next instalment!

Love Karen x

Link to comment
Share on other sites

Hi Jeanette-i am interested that your SAH was 5 years ago and you need 3hrs nap in the afternoon.

The reason I ask is that I had one 2 years ago i had real bad tiredness that got a lot better after 9months then over the last 3 months I am getting tired early afternoon again.

i just wondered if it can recur or if it is related to other stresses in my life.

Any thoughts??

Andy P

Link to comment
Share on other sites

Guest Jeanette

Hi Karen

I have been 'loosely' involved with the support group at Queens Nottingham where I had the coiling. I have only been along to a couple of meetings because of the distance but keep intouch by email.

It is a patient-led group run by very friendly, hard working SAH sufferers.

I find groups very hard work- much easier one to one.

My eldest daughter has been doing a Masters degree in health psychology and several members of the group were interviewed by her for her project on the experiences of patients experiencing a SAH.

She will be giving a talk to the group eventually when she has it returned when she has her results - I will go along to that -it will be interesting to hear what she has been up to (she can't tell me anything because of confidentiality which is quite right - but I'm nosey to know what other peoples experiences are.)

I think we have similar experiences re. the migraines and blood vessels in the fingers- but will have to write more when I have given my eyes a rest.

Take care

Jeanette

Link to comment
Share on other sites

Hi Jeanette,

Interesting to hear about your daughter's Master Degree.....you must be very proud of her and I bet you can't wait to hear her talk on the subject.

I'm also quite an inquisitive person (or just plain nosey!!) but people are fascinating and I still enjoy hearing other peoples experiences......their coping mechanisms.......the human spirit is amazing! :D

Like yourself, I'm not sure how I would cope talking in a large group and I'm probably better talking one to one. I also get quite tired when I speak for long periods now ...... before the SAH I was quite the motor mouth ..... but not any more! :lol:

Like Andy P was saying......that it's interesting that you still need a large amount of sleep during the day ..... I go through spells of fatigue, but rarely need to sleep during the daytime now.

It's also interesting that you suffer the burst blood vessels in the fingers and the migraines.

Anyway, will go now as don't want to make this too long for you.

Love Karen x

Link to comment
Share on other sites

Guest Jeanette

Hi Andy and Karen

With the fatigue- I have always had a problem with it since the SAH.

I've tried lots of different ways of trying to manage to keep going during the day- all to no avail.

I get up when I wake in the morning normally about 7.30(without the aid of an alarm clock-preSAH I could have slept through a bomb going off!)

I am normally busy all morning until I start to 'fade' by about 12.30 -then get lunch and go to bed about 1.30 until about 4.00 to 4.30. Sometimes I dont actually sleep for that long but have to get away from all noise and disturbance. Mostly I will sleep for a couple of hours and on bad days when I wake up it can take up to an hour to 'come round ' enough to actually get out of bed. Sometimes its a weird sort of feeling almost as if I'm drugged and cant get up (could of course be plain idleness!)

I know that I can make myself stay up and awake -but when I try -although after quite some time I sort of get a second wind and perk up again- until I reach that stage I get very clumsy, tearful ,not able to make even the simplest of decisions (even to the extent of if my husband asks if I want a cup of tea I would have to ask him to tell me if I do- sounds daftdoesnt it!) Strange thing is as time goes on -as I say I perk up - but if I try to miss the nap again I will start with the bad headaches.

So now I listen to my body and rest when I need to.

I do get extremely frustrated though as pre SAH I always found that I could do anything with a bit of willpower.

Have to leave it now as my eyes are giving up

speak soon

Jeanette

Link to comment
Share on other sites

Hi Jeanette,

You describe the fatigue very well.... I also know when my body is telling me that I've had enough, as I get very clumsy, can't think straight, hold a conversation etc. My eye also starts to give me grief!

Like I said in an earlier posting, I very rarely have to have a sleep, normally just putting my feet up and turnng my brain off for an hour or so, is enough.

However, if I do have a sleep, when I wake up, I'm like a startled rabbit and my head is all over the place and then I go into a stupor for a bit. But, yes, it is a little like being drugged! :lol:

Do you know what artery was affected? Mine was the post right communicating artery.

Anyway, will catch you later,

Love Karen x

Link to comment
Share on other sites

Guest Jeanette

Hi Karen

To answer your question- my aneurysm was in the anterior communicating artery I believe. Apparently there is still a weakness left below the coiling which they say can't be recoiled- so they will just keep an eye on it. The last angiogram was back in 2003- I was told I would have an MRI scan in 2 years but have never heard any more.

I suffered from migrains before theSAH- just visual effects, flashing lights and loss of the centre of vision but not really headaches. I've hardly had any since the coiling so I'm sure that it was connected.

I also had a lot of episodes of blood vessels bursting in my fingers for no reason. The doctor always dissmissed it as not important -but again -especially after hearing you mention it- I'm sure there is a connection.

The doctor thinks it might be due to high cholesterol (which I'm now on medication for but struggling with the side effects- also on meds for high blood pressure)

Take care speak soon

Jeanette

Link to comment
Share on other sites

Hi Jeanette,

It's interesting to know that you suffer from burst blood vessels in your fingers....the last time it happened to me, I was just picking up a plate when one burst.....think that I'm going to find out more about it when I next see my GP.

I don't get so many migraines as I used to, before the SAH. When you think of the impact a migraine must have on the blood vessels....when they constrict and then dilate again......it can't do us much good can it?

I have the same type as you....with the aura....zig zag lines across the eyes....as soon as I get the aura I take pain killers for the thumping head that kicks in about 20 mins later.

My coiling has compacted, but I'm due back for a MR Angio in the new year .... so I will be asking a lot more questions this time!

Anyway, away to do some work!

Catch you later, Love Karen x

Link to comment
Share on other sites

Hi Jeannette

Are you from Nottingham? I live there but had my coiling done in Plymouth as my SAH happened whilst on holiday in Devon. Mine was just over 8 weeks ago and though I have no phyiscal disability from it i find the emotional side is hard to deal with. I was going to come to the support group at Nottingham (is it the one 'run' by Elva) but I'm normally busy on Thursday nights (I'm trying not to stop doing too many things that I did before).

Anyway will sign off to keep this short and sweet (like me :wink: )

Love Sami xxx

Link to comment
Share on other sites

Guest Jeanette

Hi Sammi

Yes, it is the group that Elva runs -its a nice friendly group. They have various talks by different doctors and other relevant people who can answer questions.

I dont live in Nottingham-near Swadlincote between Derby and Burton on Trent- so its a bit too far to get over to the meetings (especially so early in the evening)

I was taken first to Burton hospital but transferred to Nottingham where I had the coiling. I was there for 10 days and supposed to go back to Burton when a bed was available -but because Vic, my husband ,works from home I was allowed to go home instead of over to Burton as long as I had someone with me to wake my up for the medication. In fact he took to his nursing duties like 'a duck to water' Ive been very lucky that he has been around when I needed him.

take care

Jeanette

Link to comment
Share on other sites

Hi Jeannette

Like I say I've not managed to get to the group either - i also found the thought a bit daunting if I'm honest.

My husband has been a good nurse too. I'm lucky enough to run a company with my husband so there was never any danger of me losing my job, but I actually found that getting back to work as soon as possible has helped me focus and try to feel normal. I haven't suffered any physical effects but get tired still (I'm only 8 weeks post SAH).

The surgeon that operated on me in Derriford is the brother of the operating surgeon at QMC Nottingham - so we may have been operated on by brothers :P

Anyway work calls so I'll catch you all later

Love Sami xxx

Link to comment
Share on other sites

Guest Jeanette

Hi Sammi

Don't be put off giving the support group a try if you get chance- take your husband along with you. Most of the members seem to have 'carers' with them and Vic said that he found it really helpful to him to help him understand how I was affected by listening to other people.

I'm not very good at expressing how I'm feeling so it can be useful to hear other peoples experiences. My way of coping seems to have been it largely ignore what has happened (probably the wrong thing to do) but I find that if I can carry on as 'normal' in a morning when I am rested and able to do pretty much anything then hide away for my nap in anafternoon to recharge my batteries then set off again with anything else I need to do after my nap. I don't like people to see when I'm not functioning properly.

I have periods of depression which usually I manage to keep on top of but are worse when I get too tired (back to listening to your body) and when I have to face up to my limitations. Also a bit factor I'm sure is the onset of the menopause.

I found that when I reached the point of accepting that I had made all the improvement I was realistically going to achieve I stopped struggling to keep up with everyone else and looked at things differently- it made quite a difference.

Have to leave it here

Catch you later

Jeanette

Link to comment
Share on other sites

Hi Jeanette,

I think that you do eventually have to reach a point of acceptance .... I haven't given up hope of any more recovery....but I think for my own sanity, it's been better to acknowledge my limitations and work with them, rather than pulling against them. Any further recovery that I make, I now see as a bonus.

Lots of love, Karen x

Link to comment
Share on other sites

What an INTERESTING point, Jeannette. Very insightful. I think a lot of my own depression lately has been the frustration with my not being a lot better by now. The docs had told me to expect fatigue for 6 to 9 months!!! We should all be that lucky. It might have helped if they had said it could be forever. Anyway, I think I'm just beginning the process of acceptance. I feel like wearing a sign so people know why I'm not the go-getter I used to be. I often feel that my sports friends and art friends think I'm quitting or winding down. My very close circle of friends and family are very supportive and help me to allow myself to be the new me. But even they need reminders sometimes. It's sad. It's a letting go for sure. But heck, if the burden I carry from here is naps (!) how lucky is that??? When I think about what some diseases or disabilities ask of people.... wow. I think I can live with naps. I sure wish we had a support group here for SAH and their carers. That would be great.

Link to comment
Share on other sites

Guest Jeanette

Hi Annie

Its a pity that you don't have a support group near you - you could always set one up!

I think that a problem that a lot of us have is that we look quite well and 'normal' and because most people don't know much about the condition friends forget that we have a problem.

Regards

Jeanette

Link to comment
Share on other sites

Hi there

I think it would have been good If I'd went to a support group, just to be able to say that what I was going through wasnt just me being silly.

I found that people got fed up hearing about things so I stopped talking about it.

bye just now

Louise.x :wink:

Link to comment
Share on other sites

Hi

I know, since finding this site its been like a huge weight's been lifted in a way, there wasnt a group where I am & if there was I wouldnt have been able to go.

Apart from going to OT its been down to me.

Take care

Louise.X

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...