View Full Version : Learning lessons and taking it forward
I got my new prescription through today to try and deal with my IIH. I’m now on Topiramate. There’s a slight chance it’ll affect my lithium levels, so they’ll have to keep an eye on that and there’s a more than slight chance it’ll affect my depression and anxiety. But forewarned and all that. On the up side, there’s a reasonable chance I’ll lose weight ;)
How do you feel about it?
If my IIH doesn’t get under control, I could end up with a shunt. So I need to try this
It's good you're going to try it...
How are you today?
Bleurgh. Nauseous, dizzy, general new drug sort of day :/
Stella180
16-05-20, 12:12 PM
That sucks mate. Take it easy.
Will you pace? Take things gently?
I am, I’ve hidden myself away in the tv room with my cross stitch and David Boreanaz. I tried Rock Choir this morn8ng but got lightheaded
Are you watching the Eurovish tonight?
Stella180
16-05-20, 06:29 PM
David Boreanaz? Buffy? Angel? Bones?
David Boreanaz? Buffy? Angel? Bones?
Bones - I’ve been watching them all from the beginning again. They’re on the cusp of getting it on ;)
Are you watching the Eurovish tonight?
God no. Sorry, hunni, this is one area we disagree ....,,
ROFL! Hope you're taking it really easy...
Oh how are you doing with your ebay challenge?
I’m waiting for the rings to be delivered. I made offers on them and got £10 off one and £20 off another so I’m hoping I can make a small profit
Almost 11 hours sleep last night - obviously needed it ....
Good! How are you feeling today?
Tired (?) but not as dizzy atm
Glad you're not as dizzy - hope you're still pacing love...
Stella180
17-05-20, 12:49 PM
Oh the joys of new meds eh? It can be a wild ride at times but just have to go with it.
Ok, really dizzy now, and massive brain fog. Oh, and all liquids taste metallic, which is always fun. I’ll have to pace as I can’t focus on anything..... looking forward to this passing
Stella180
17-05-20, 02:12 PM
And it will pass but you know that already.
It will pass, you know that love... Hang on in there. x
I’ve spent the afternoon lying down as I’m so dizzy and have no energy. But I’m hanging on
You're amazing. Keep fighting. You know deep down that this will pass.... I'm glad Si's at home with you - is he working from home currently as you are shielding?
Yeah, he reckons he’ll be working from home til the end of the year, maybe permanently
OOO how do you (both) feel about that?
He’s fine, they’ve just had a survey about it - he thinks they’ll have an outcome that the majority will work from home with the occasional meeting in the office. With the offices in London, there’s a feeling they should reduce commuter numbers.
I’m good about it. I like having him home and we’ve got the space so he’s not in the way :)
I think it sounds really good for all concerned - not doing the long commute has got to help his stress levels too!
So, I’ve been up for an hour and only had 1 dizzy spell. Long may it last :)
I was just going to ask how you are today... Long may the no dizziness continue!
Yesterday I posted this on fb
“I think I’ve just agreed to use the throw that was on our bed, that Jax has claimed as his, to repair the bed that he loves but has chewed and to make into an extra layer of comfort for his other bed. #pamperedpooch”
It’s taken me most of today but I’ve repaired his bed by sewing the torn fabric back together, by cutting out a 60cm x 88cm piece of the throw, and sewing it (2 fabric layers and 1 quilt layer) onto the bed. I’m really chuffed with it. Tomorrow, I’m going to make a ‘blanket’ for his other bed. :)
Stella180
19-05-20, 09:04 AM
Pics???
Awww I love that he's being so pampered!
He is pampered. I said to mum last night that I think he’s being especially pampered as we’re projecting our grief over Polo on him. And I don’t feel in the slightest bit guilty about it ;). Anyhow, pics before and after
https://i.ibb.co/7k2Y4Qw/E8972287-1224-4-FD1-8215-CEA0-C73-F69-B7.jpg
https://i.ibb.co/hm7Vpwr/54-DE4615-BB29-4949-89-AD-31-A3-BF49-FC89.jpg
https://i.ibb.co/Lz9KhRW/097-B9-C3-D-F2-DC-41-C1-860-D-2-FFC5829648-B.jpg
Stella180
19-05-20, 04:28 PM
Lucky pup
Doh. My eyesight was really blurry this morning and I panicked as I thought it was something to do with the topiramate. I asked Si to check my glasses weren’t dirty, which they weren’t. So he asked, ‘are you sure you have t left your contacts in?’ ..........
Oops! How's the dizziness etc?
OldMike
20-05-20, 09:04 AM
Jax bed looks brilliant. Hope your blurry eyesight soon clears up, I get that sometimes usually when I'm tired.
Thanks mike. Nope, eyesight definitely down to contacts and glasses at the same time .. ;)
Sorry, Suzi, didn’t see your question. Dizziness all gone. I’m ok now, thank goodness
I’ve spent the afternoon horizontal again ......
Stella180
20-05-20, 07:21 PM
I wish I had. How do you feel now?
Spinning. Not in a good way
Stella180
20-05-20, 07:45 PM
So much for the dizziness being gone eh? :(
We’ve had news on my cousin. His op removed all his bowel and he has a stoma. They can’t do anything about his liver cancer - he’s having chemo but only to prolong life. I don’t know how long
Oh lovely, I'm so sorry. Definitely not the news you were hoping for... In my thoughts and prayers lovely.
I’ve had a distressing day. I rang the doctors to talk about my new prescription for the higher dose that should start next week. She was very thorough and quickly realised that the topimarate dose prescribed by the neurologist was 25mg at night for 2 weeks then 50mg at night repeating. The prescription supplied to the pharmacy (which I was given a copy of) was for 25mg twice daily for 2 weeks then 50mg twice daily repeating. It’s no wonder I’ve been feeling so ill, with all my other meds. The doctor was cross and is going to flag it up as a potentially dangerous mistake. Anyway, we agreed it doesn’t make sense to go back a step but I’ll be taking 50mg at night, which may mean no dizzy spells in the day. I also asked her about the slight possibility that topimarate affects lithium levels so she agreed I need a lithium blood test. As I’m on multiple meds she also said they’ve recently taken on board an in-house pharmacist and she’s going to task her to look at all my meds and make sure they’re agreeing with each other.
An hour later she called back. She’s decided to have a good look back at my history and bloods. Where she discovered 2 things. 1. I’d been over medicated with my thyroid medicated since 2018. And 2. My last lithium blood test in March had shown my lithium level was right on the absolute top level of normal. Both she was very worried about. So, I’ve got to drop the thyroxine and have a blood test in 6 weeks and I’ve got to have a lithium test now (I’ve booked in this Tuesday) and we decide next steps from there.
I’m angry, and upset. All of this has and could have had a huge impact on my health. The lithium could have made me seriously ill and how could they have missed the thyroxine for 2 years?
Stella180
21-05-20, 06:17 PM
Wow! That is madness. When you are tested regularly there is no excuse for missing any of these things. No wonder you’re upset by it, I’d be exactly the same. Thankfully you’ve spoken to someone how it on the ball and it’s all getting resolved now.
Jaquaia
21-05-20, 07:24 PM
That's ridiculous. How on earth has that been missed??.
I have no idea. I’ve been in tears a lot today - they’ve let me down big time.
That's disgusting! I'm so glad it's been found now, but so many mistakes is unacceptable. I hope you're putting in proper formal complaints...
Probably, but Si wants me to focus on getting it sorted first, for my own benefit. I don’t know if he’s right or Katie, my mum and my best friend .....
They are right and of course getting you sorted is the most important thing..
Sorry, I wasn’t clear. The girls disagree with Si and think I should make a formal complaint
Stella180
21-05-20, 10:17 PM
Yes, maybe you should make a formal complaint however the priority has to be on getting everything right with you first.
How do you feel? Would drafting a letter help get this all out of your head? You don’t have to send it straight away and maybe Putting all those frustrations down on paper would be therapeutic? I dunno.
How do I feel? Yesterday I was shaken up. Today, I’m furious.
I'm not surprised.... What are you going to do about it?
Get things sorted first then go in all guns blazing?
Is this a new doctor?
She’s certainly one I’ve never spoken to before but, like all surgeries nowadays, they’re changing hands all the time
I’m struggling with severe brain fog today
Jaquaia
22-05-20, 03:03 PM
So rest and take it easy
Jaq's right. Your poor body is going to struggle with so many changes... Be kind to you.
I’ve not been able to do anything today. Have barely even managed to watch father brown. So I’ve painted my toes instead
Well done on painting your toes! What colour did you go for?
Stella180
22-05-20, 09:16 PM
Glittery?
Glittery?
No but very bright.
I’m so fuzzy, it feels like my brains working at 40%. It’s a real struggle to do anything ...
Stella180
23-05-20, 02:00 PM
Your 40% is still an improvement on the majority of guys I’ve dated.
I’m not sure that’s a compliment :P
Stella180
23-05-20, 05:42 PM
Well I guess they’d have to be pretty dumb to date me anyway.
Oh do not turn that on you! You’re awesome!
OldMike
24-05-20, 10:36 AM
I’ve not been able to do anything today. Have barely even managed to watch father brown. So I’ve painted my toes instead
I love Father Brown even though they're repeats. Pink toes now that's cute.
I love Father Brown too!
Hope today is less foggy for you love.
I am not loving this drug. I am very anxious and am also suffering from bleeding gums (apparently a common side effect)
Are there any alternatives?
I don’t know. One of the alternatives I had a nasty reaction to, the diuretic isn’t helping. So I don’t know where we go from here. Si has suggested I speak to the GP on Tuesday about stopping it and then get a tel appointment with the neurologist
Struggling. Other than my bloods and talking to the doctor, I’ve been sleeping all morning. Except when I’ve been wringing the plaster between my fingers......
GP has asked me to halve the dose tonight and will call me tomorrow, hopefully the lithium results will be back. She’s also asked me to speak to the neurologist asap, so I’ve spoken to his secretary and she’ll email him. GP was very keen on making sure I had people around me
I'm not surprised she wanted you to have people around you.
What've you done to your fingers?
You still feeling rough?
Ah no, it was the plaster from my bloods - I took it off and was just wringing it Through my fingers for about half hour
Yeah, I’m rough. I spend my life trying to keep stable and this screws it all up
Oh lovely, it will get better...
Stella180
26-05-20, 12:53 PM
It’s just a bump in the road. It’ll soon be sorted.
Really? Only the GP was loathe to reduce the topiramate because ‘you’ve tried everything else’
Had a call from a different GP this evening. Lithium results back already and they’re high. Because I was taking the whole dose at night, he wants me to try splitting the dose between morning and night to see if my body copes with it better that way - and retest in a month
Stella180
26-05-20, 08:32 PM
You think that with help?
My lithium has apparently been an issue for a couple of months, so no. But if it makes them feel better ...
It's not good enough really love.... I hope when your body is more sorted that you go out for blood...
OldMike
27-05-20, 10:09 AM
Hopefully splitting the lithium dose will enable your body to deal with it better (panda)
How are you doing today gorgeous?
Rough. On top of how I’m feeling, I’m also now dealing with changes in 3 different meds.....
Stella180
27-05-20, 11:50 AM
And you know what? I have every faith in you getting through this cos you are freaking awesome. I know it’s hard right now and everything sucks but if anyone can get through a tough patch like this my money would be on you from the start. You’ll get through this. I wish there was something I could do to help.
Then pace, rest, shout and scream at me if it helps... This is beyond tough...
Hi Paula I’m sorry that you are having a tough time with new meds/ combination of meds. I thought that lithium levels varied from person to person and are ‘set’ depending on what illness you are treated for. I always thought that levels for bipolar were higher than for severe depressive disorder. My last blood test in April was 0.9 which I thought was a bit on the high side but still in the therapeutic range. I’m guessing that your therapeutic range and dose are different. If it is or has been a few times on the high side then they have a responsibility to drop it a bit. The hot weather does not help and the new drug which is probably pushing the levels up. I know when I’ve messed up the lithium dose I’ve felt a bit weepy. When do they review this ?
4 weeks. I’ve been on lithium for 13 years and have never had a problem before
You've got this. It sucks and it isn't right or fair, but I know you can do this...
Jaquaia
30-05-20, 08:32 PM
How are you doing?
Mentally, fragile but a little better than a couple of days ago. Physically, the mental block I’ve been using since Bath has come crashing down so I’m sore, very sore. Si is being amazing and just letting me do whatever I need to do to keep calm. That mainly involves watching Poirot.....
Stella180
30-05-20, 10:59 PM
Poirot? Not the Winchester Boys? Oh my! We need to have words my friend.
I can’t focus on much else
Stella180
31-05-20, 12:39 AM
Fair enough mate. I know how that feels.
I've recently rewatched all of Poirot! Awesome x
Hope today is a little brighter though lovely...
I have chewed all the skin around my nails. They’re really sore
Oh no! Ben and Hazel do this.... (panda) Today a little brighter?
Today is distinctly all over the place ...
Jaquaia
31-05-20, 04:01 PM
Can you take it easy?
I am:) got Housegroup catch up in a bit but otherwise not doing much. Si bought me a cornetto, bless him (lots of WW points but I’m trying to ignore that...) and I’ve had a FaceTime chat with a Katie. So being spoilt
Is Katie coming to see you tomorrow in the garden?
Strugglingmum
31-05-20, 05:42 PM
Slow and steady.
Is Katie coming to see you tomorrow in the garden?
Yes for a BBQ :) after work.
How is it that sitting in my TV room chatting to friends on Zoom has left me so sore? Have I just forgotten? I was going to contact Bath for any advice but they have completely disbanded and been reallocated until the current crisis is over, so I won’t get hold of anyone. So I’ll have to get back by myself
I'm so glad about Katie!
You can do this. Think back to day 1 at Bath.... What did they say?
Day 1? We can’t cure you (lol). Today, I’m too tired to even begin to work on it
Then don't today. See how you feel tomorrow.... Just doing the basics is good too remember...
OldMike
01-06-20, 10:56 AM
^^^ What Suzi says
Yipee a BBQ with Katie sounds lovely.
So I did a little bit of research last night on prolonged overtreated hypothyroidism. Turns out it’s a significant risk factor in osteoporosis......
Let's not borrow trouble shall we? You've got enough dealing with the here and now, rather than worrying about what "might" happen in the future.......
How are you today?
Stella180
01-06-20, 01:26 PM
Step away from Dr Google.
Not dr Google, it’s the main U.K. charity for thyroid disease, a charity I've obviously had an interest in since lithium damaged my thyroid 13 years ago, which meant having to have radiotherapy, which destroyed my thyroid.
It’s also not a sometime in the future either as with a hyperactive thyroid (which effectively the over medication gave me), a scan is recommended 2-3 years after successful medication starts.
As it’s the GPS (swear)(swear)(swear)(swear) up that led to my prolonged over medication, I’m going to insist on a bone scan.
Jaquaia
01-06-20, 05:33 PM
Sounds sensible
Stella180
01-06-20, 06:22 PM
Sorry mate I didn’t mean to upset you. It sounds like a bone scan is a good plan and with hopefully give you some piece of mind that no permanent damage has been caused, not that that lets the quacks off the hook.
Absolutely get that scan. It's the least they can do. It's disgraceful what's happened to you.
I’ve talked to Si and I’m going to completely stop the topiramate. I’ve not yet heard from neurology but I’m done waiting.
I’m closing this thread as. It’s far too long
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