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Henry1234
31-12-08, 11:18
Hi - I have just joined after weeks of reading posts on this site - I have to say this site has been the one thing to keep me sane and reading everyones experiences has really helped me - I have to admit that in real anxious and panicky times this site now calms me down quicker than the usual deep breathing and sips of water etc!!.

Well my story is a bit long but here goes

I collapsed at work in July this year - was told I was having panic attacks and anxiety three times on visits to the A&E - my Doc helpfully told me to go for a walk in the fresh air!!.
To cut a long story short I had a Pituarity tumor that was bleeding - scary but once diagnosed correctly (I had to go private!!) was operated on and I was out of hospital within a week.

I made a good recovery for 3 weeks but since then my life has been plagued by symptoms and anxiety and panic.

Every twinge I get is the tumor back - I have been to A&E 22 times since August!!!!! - even the cleaners know my name (I have to say the staff treat me well - whether this is because of the misdiganose ongoing complaint I am not sure!!) and am at my GP every other day.

Most of the tests have come back negative although they are looking into Lupus and am awaiting other tests for that on Friday.

I was getting so bad and anxious that I would wake up and 'madly panic' until I got to A&E (it is on my road!!) - I wouldnt always register but sit there all day just in case - often I would go there and asses how busy it was in case I needed urgent help and could judge if needed to stay there or could go home safe in the knowledge it wasnt too busy.

I wont bore you with my list of symptoms but they range from sweating and red face through to arm pain and pressure in forehead,vision problems and tinittus - also feeling faint and woozy which I hate.

My GP told me about Health Anxiety and I was cross at first thinking'huh if she had been through what I have etc etc'

When not at A&E I constantly check the internet for symptoms and am amazed at what I can find if try hard enough

I also have a BP home monitoring unit which I can use upwards of 100 times a day - if its high then I will sit there redoing it until its lower - if its too low(in my mind) then I will sit there and panic until it goes up - if its normal then I wont beleive it and will recheck it until it isent!!!

I constantly ask my partner of 20 years how he is and LOVE IT if we share the same symptom as I feel safe - hard to admit but am pleased if people are having symptoms as seems to reassure me - if that makes sense

I suppose I am wanting to ask is it normal for someone who has had what I have had to experience such anxiety - I say anxiety but really it would be truer to say my life is ruined and overtaken by this.
I cant go out very far - dont like meeting people and even find talking on the phone hard in case it happens.

I also get overwhelming feelings of impending doom and depersonalisation which are some of the hardest feelings to get rid of.

I cant seem to stop it and while I do have health issues that are unresolved at the moment need to get out of this cycle.

Anyway thanks for reading this and sorry to have gone on - it helps

Mark :blush:

ps after my experience I also dont believe any negative tests that come back and feel like I constantly need to have the tests redone

LeeBee
01-01-09, 04:01
Hi Mark - no wonder you are anxious, given your experiences it is totally understandable.

It's great that they were able to operate on and remove the tumour. Did they have to remove some of the gland as well, as I understand that can effect you in a variety of ways? I wonder whether a support group for people in the same position as you - who have had a brain or pituitary tumour that has been successfully operated on and are trying to get on with their lives - would help?

Henry1234
01-01-09, 10:04
Hey - thanks for the reply

My Doc is looking into a support group and am waiting to hear re that - I think it will be a good idea - I emailed Russel Watson as we had the same tumor but he didnt reply:ohmy: !!!!!!

No none of the gland went as far as I know but they did say all the sinuses continue to be infected and inflamed due to the op

Will let you know re support group - it deffo would help

Mark

fairyloveheart
01-01-09, 11:43
I am now convinced I have a pituitary tumour. I have had facial pain for a year, I had a ct scan, but I have now just read that these tumours are rarely identifiable in this way.... am petrified. The doc has washed their hands it feels like and just referred me to a pain clinic. I am soooo worried, I can't eat or sleep and just am in a state of panic, which then makes the pain worse. I feel dizzy all the time. I had a sinus ct again in Dec which showed nothing.....HELP

Henry1234
01-01-09, 12:12
Hi

well a ct sinus SHOULD have showed any problems - I say should as my post op imaging was MRI and CT as they both show the area - the Sphenoid sinuses are right next to the Pituarity etc

I am not sure what to say to make you feel better - no good saying it wont be that and dont panic as I was told that many times!!!

Hvae you any vision problems or feeling faint?

Mark

Boos Mum
01-01-09, 13:11
Hvae you any vision problems or feeling faint?



don't forget I had/have these and a pit tumor and they are unrealted even :roflmao:

Henry1234
01-01-09, 14:09
True but they can be related as well

Boos Mum
01-01-09, 14:19
True but they can be related as well

Shhhhhh you, I'm trying to help!

:roflmao:

Honestly though, yeah anything is possible, like an old GP said, lets think horses first then zebras

fairyloveheart
01-01-09, 17:15
Yes, I keep feeling dizzy and faint, but haven't actually blacked out. The docs just arn't listening to me..... :(

Henry1234
01-01-09, 17:29
oops sorry

I understand when you say they wont listen

I am not sure what to suggest you do if they wont - maybe try one more time to tell them what is happening? - maybe ask to see another DR at the surgery if thats possible?

Mark

fairyloveheart
01-01-09, 17:37
Sorry, not meaning to take over your thread, you can have it back!!
I have seen most of the docs in the surgery. I feel like my whole life is spent waiting for the next symptom....and thinking maybe then they'll listen.
I know that I can't put up with this for much longer though. Facial pain everyday, sometimes the pain is unbearable.

I am glad that your tumour was treated and sorted. I think you are very brave. I haven't been to A and E - now there's an idea!!

I am having some blood tests next week and will then have to go back for the results. I understand that sometimes hormonal levels can be detected in your blood so maybe something will show up in those.

I hope that you can find some peace too and can get over this horrible HA. I envy people who just don't worry and think, whatever will be, will be.
x

lamentinglaura
01-01-09, 18:25
No wonder you experience the level of apprehension you do. I've suffered from health anxiety all my life and I've also experienced some very real health problems, one of which was misdiagnosed so I can sympathize with you. I think this is a good place to come to help ease some of the anxiety. It helps put things in perspective. Welcome to the board.

Henry1234
01-01-09, 20:10
Thanks Laura - am hoping so! - being misdiganosed is awful

Fairy - you are right the hormones can be detected in the bloods - I am saying nothing about going to Casualty but I felt that bad I had to keep going back until they took me seriously

springblossom
24-02-09, 18:35
I was diagnosed with an enlarged sphenoid sinus some time ago...does that require treatment?