Bipolar Disorder & IIH

[Louise1967]

Hello all. Had a great weekend in Cardiff even though the shopping was unsuccessful and I got disastrously drunk on friday night and was put to bed by 10!!!!! On thursday Victoria was given tablets so that the GP could perform a Dexamethasone suppressant blood test to check for Cushing Disease on friday morning, still waiting for the results but really strangely she woke up on friday morning completely sympton free, it lasted till saturday morning when once again she woke up feeling S :censoredT!!! Was wondering if anyone else has had this test or if they had ever heard of it, as it does seem really weird that she was fine after having these tablets.

She is determined to stay in her own flat and I dropped her back there last night, she hates giving up her independence for any length of time and although I worry when she's not with me I understand her need to just get on with things for the time being. 

[x Shelly x]

Hi Louise,

  I hadn't heared of cushings desease or the name of the Dexamethasone test they gave her so I googled them both.  Dexamethasone is an anti-inflamitory steroid 20-30 times more potent that hydrocortisone.   It has lots of uses but the one that caught my eye when reading a wikipedia article about it was that it is used to treat high altitude cerebral edema (an acute form of mountain sickness)  I guess it worked by reducing the CSF pressure for a while.

    Michelle

 

[Emysmum]

That figures, acetazolamide is also used for altitude sickness. 

[Louise1967]

Many thanks for your replies. Blood tests came back clear and as you have both mentioned doctor said ease of symptons was due to steroid tablets the night before. He is writing to her consultant to inform him has recommended Victoria ask for steroid treatment when she sees the neuro.

The neurologist is gonna love us........NOT, a needle phobic patient and her google addicted mother. Tory is feeling rough today and cant seem to shift her chest infection, poor little thing is getting really fed up. Thank god for cuddles and chocolate!!!! oh yes and people who understand xxx

[Louise1967]

Went to see the Neurosurgeon last week at Barnstaple hospital, he has to come from Exeter as they dont have a resident one of their own, he was not very impressed with their treatment of Victoria and was under the impression she was diagnosed two weeks previously and already on Diamox Grr Grr!!!!!

He said Victoria's IIH is quite severe and started her straight away on Diamox, 750g per day for 3 days then up to 1500g per day. I know its early days but............apart from not being able to drink diet coke coz it tastes vile, and the odd tingly feeling in her feet, her headaches are just as bad. She now also has chronic heartburn which is making her throw up 

Mr Harrower (the neuro) was very nice and explained everything in great detail (not sure Victoria thought this was a good thing). He mentioned the swear words "lumbar Puncture" and Victoria went white and said no  way. He offered to admit her to Exeter, lightly sedate her and do it under X ray to which she replied NO  Way!!!!! I knew this was going to be a sticking point. He told her to have a think about it and ring him when she had decided. If Diamox doesnt work he wants to introduce Topimirate (i think ) and if still no better will refer her to Plymouth for a Shunt, he said he wont wait very long unless he sees a dramatic improvement. He wanted to see Victoria in 3 weeks but they have sent her appointment for 5 weeks, bloody hospital waiting times are doing my head in.

On the plus side we talked about the LP after the appointment and she has reluctantly agreed to have it done, with the comment through gritted teeth being "Mum, you can tell you work in Sales!!!!!".

Following day was the Eye specialist and at last some good news, her vision hasnt got any worse, no better either but the same is as good as it gets at the moment. Bit worried about the double vision as its not known to be an effect of IIH apparently and could indicate something else,  .

Tory is still feeling really rough, has no energy and is sleeping for Britain (at least one of us is). She joined weight watchers this week and is going to give dieting a go to see if it makes any difference. Fingers crossed it will and the tablets will work and she will be back to her normal bubby self soon.

[Emysmum]

Bit worried about the double vision as its not known to be an effect of IIH apparently and could indicate something else,  .

Oh yes it is. Emily sometimes gets double vision and has even had triple vision! See IIH UK symptoms and treatment: http://www.iih.org.uk/iih.php

Glad to hear Victoria has finally started some treatment, hopefully things will improve. The first couple of weeks on diamox might be a bit odd but things do settle down. Emily was 'spaced out' for the first week or so.

Well done with your sales technique.

  Ruth

[clairec]

 

Yep, double vision can definitely be a symptom of IIH.

With regard to the heartburn, I used to get really bad heartburn when I first started taking Diamox and my GP prescribed me Omeprazole.  Worth speaking to Victoria's GP to get something to help with that as if she's throwing up then she won't be getting the full benefit of the Diamox.  Also, is she on the standard Diamox or the sustained/modified release version as they tend to be much easier to tolerate.

I didn't get much relief from my headaches with Diamox alone, although they greatly improved my pap, but then they started me on Topirimate (the generic name for Topamax) and they helped massively.  I still get some headaches but they are mostly controllable with painkillers and for the most part, for me, IIH is controlled with my combination of Diamox and Topamax.

I hope Victoria does start to get some relief soon, but definitely get onto the docs to get something for her heartburn.

Take care
Claire
xxxxx
 

[Rachie]

Louise

Dexmethasone and sometimes a drug called mannitol are used to treat acute raised intracranial pressure - ie in ITU's following a head injury or for someone with a brain tumour where swelling needs to come down first before surgery. Its just a short term treatment.

Thats why I guess the neuro wanted her on Diamox. The test for cushings, which is an endocrine (gland) disorder which can cause weight gain amongst others just uses dexmethasone as the body would react to the steroid if cushings was present (in simple terms). I guess there was some disagreement over her diagnosis between the docs reading between the lines??

Diamox does take a while to work, so dont lose heart. Its good that her vision is stable at the mo. I guess her appt in 5 weeks will give the diamox time to be effective if it is going to be,  and it will be apparent by then if Victoria needs a shunt or not.

I had lots of funny double vision and weirdness in my eyes when my IIH was really bad. My neuro also told me that photophobia is not a symptom of IIH - we had to (ahem) beg to differ on that one as anecdotally most IIH sufferers report this! I think so little is known about IIH and it causes, symptoms etc and its so variable from person to person that you just have to know what is "normal" symptoms for you as an individual.

Good luck with it all
ps
Rachie

She now also has chronic heartburn which is making her throw up 

Yup me too - I vomited loads when my pressure was high and the reflux was due to the diamox - but as it was working for me to reduce my Pap I stuck with it - but that is something you and V's neuro will have to weigh up the pros and cons for.

[babbles]

Hi Louise

I am Schizophrenic so know a little more about Mental Health Issues.

I was diagnosed with IIH in April 2008,  I take each day as it comes,  I think your daughter will be fine as long as she sticks to her meds.

[Louise1967]

Thanks everyone for your replies. Will speak to GP about omeprazole coz I know heartburn is bloody awful to just put up with. Glad to hear that it takes a while for Diamox to work, Victoria is a bit downhearted as I think she was expecting it to be a miracle cure (I bloody wish).

On top of everything she is now coming down with a cold and is proper grumpy.Glad to hear that double vision is not uncommon, because that was freaking us both out a bit.

Perseverance is obviously the key with this thing!!!!!