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Coping with chronic illness and nausea. Any advice?

(77 Posts)
Grandyma Tue 28-Nov-23 11:21:03

In September I was taken to hospital with breathing difficulties. I was told I’d had a heart attack caused by a blood clot. I was critically ill and transferred to ICU. I will spare you the details but after a few weeks in hospital I am home with myDH is caring for me as I’m very weak, not very mobile and taking a lot of medication. I have had gastric problems for years but the medication I now need for my heart failure are causing terrible nausea. In particular I’ve just been switched from Warfarin to Apixaban and the nausea is awful. I’ve lost a lot of weight and, although only about 8/9 stone pre-illness I’m now just over 7st. I’ve had good advice from the dietitian but because of the nausea I’m struggling to get food down. I get extremely anxious about all this, which obviously isn’t good for me. Has anyone suffered similar nausea issues with medication and is this how my life will be? I don’t like leaving home due to fearing being sick. The only time I go out is for hospital appointments. If I have to expect to have to live with the nausea, does any have any advice as to how I can cope. Sorry this has been a bit long.

Grandyma Thu 07-Dec-23 22:53:42

Katyj I suffer with chronic nausea anyway but within hours of taking the first Apixaban tablet I felt terrible. When I finally got the hospital to put me back on warfarin and I was able to stop the Apixaban, I felt better. Nausea is one of the listed side effects of Apixaban. I really do hope your mum feels better soon 💐

Luckygirl3 Thu 07-Dec-23 18:31:35

So glad you are feeling a bit better.

Katyj Thu 07-Dec-23 18:26:55

So pleased you’re feeling better Grandyma. Just wondering if it’s Apixaban that’s causing my mums nausea, she has very little appetite. Feeling sick is horrible. Hope you continue to improve.

Grandyma Thu 07-Dec-23 10:43:43

Sorry for the delay in updating all you lovely people. I’ve been put back on Warfarin which means I can stop taking the tablet which was making the nausea so much worse. I’ve felt a lot better and I’m hoping my appetite might improve. Nausea is something I have to learn to live with I think due to the amount of medication I’m taking but if it’s not so severe I can tolerate it. I am expecting a visit from the physiotherapist today, I had to cancel last week as I was so unwell. I know I can improve my strength and mobility and I need to be able to manage the stairs as the bed downstairs is not ideal. I can’t find the words to express how much you all helped me last week - I thank each and every one of you.

Katyj Thu 07-Dec-23 08:10:51

How are you Grandyma. Hope you’re feeling better.

Marydoll Sun 03-Dec-23 16:13:46

I asked about a cardiac nurse at my rehabiltation course and was told there wasn't one, just to go on the BHF website!!!!

Grandyma Sun 03-Dec-23 14:46:51

I do have a Cardiac nurse. I’ve seen her once and she gave me an appointment to go back in 6months. In the meantime she gave me a phone number to call with any concerns. It’s an answerphone. I’ve left messages over the past couple of weeks but never get a call back 🤷🏻‍♀️

Marydoll Sun 03-Dec-23 14:05:16

HousePantQueen, thank you for that comment.

The counselling leaves you feeling really raw, before you can feel better.
For me, it was cathartic, I was able to offload my fears and anger, without upsetting my loved ones.

I understand exactly how Grandyma feels. You feel there is no light at all at the end of the tunnel, but then a faint glimmer appears. Never give up hope.

People mean well with their suggestions, wrist bands etc, but nothing hits the all consuming nausea, which takes over your life. I have prescription to try yet another new anti nausea drug tomorrow.
The difficulty is that you need to keep taking the heart medication, ( in my case both heart meds and RA meds) which makes you so ill. You have no choice, but to put up with it.
Someone said you should have a heart failure nurse, that is not always the case. Your heart failure needs to be severe.
The waiting lists here are over a year to be even be seen by a cardiologist.

I feel so sorry for you Grandyma, and hope you get the support you need.

HousePlantQueen Sun 03-Dec-23 13:40:44

I have no advice to offer, but thank you Marydoll for being so honest about your own health problems and acknowledging your initial hesitation in accepting counselling. I am sure this is of great help to Grandyma and anyone else going through the same kind of thing.

Gransnet at its best flowers

Grandyma Sun 03-Dec-23 13:32:44

Mainly been in bed yesterday and today. Trying everything I can think of to make myself feel better. I’ve got an appointment with the Warfarin clinic tomorrow morning. They will put me back on warfarin and then I can stop taking the tablet that I think is making me so unwell. The only relief I get is when I’m asleep atm. My poor DH he looks so worried I dread to think what I’d do without him. I’m so lucky in so many ways but I can’t cope with this. I’ll update you tomorrow.

Philippa111 Sun 03-Dec-23 13:13:59

With the NHS now you have to say things are really ,really bad before they will do anything. When/if you phone 111 don't be afraid to 'moan' and tell it like it is. You do have to be insistent.
I have just remembered when I had acute nausea my Chinese acupuncturist recommended boiling a whole chicken and drinking the liquid . also eating white bread and apples... raw, apple sauce etc. It worked.

albertina Sat 02-Dec-23 19:08:39

I'm sorry I can't offer advice on this, but I hope that medications are sorted out soon for you so you can recover more comfortably.

Caleo Sat 02-Dec-23 13:41:13

Grandyma, I am still thinking of you still hoping you are feeling better

Ikiesgranma Sat 02-Dec-23 05:52:56

I’m sorry that you’re feeling so ill. I have been having chemo for inoperable cancer and different types of chemo cause different side effects. My second line of treatment caused me to lose my taste buds and my mouth was incredibly sore. I was admitted to hospital with severe dehydration. I was prescribed ensure drinks which my husband made me drink every few hours. They don’t taste great but I found that if I used a straw and had it quite far back in my mouth I could manage it better. Good luck

MrsAF Sat 02-Dec-23 01:12:16

Heart failure is a horrible term and you must be anxious which won’t help with the nausea. There is a heart failure charity called Pumping Marvellous which I have found very helpful & supportive. They have a website and Facebook page. My DH was diagnosed 5 years ago & the meds can be and are tweaked. Ask your GP to change your meds & ask if you can be allocated a heart failure nurse (I think NICE guidelines say you should have one. Good Luck I hope things improve.

Dempie55 Sat 02-Dec-23 00:14:02

I don’t know anything about medications, but just thought I’d mention the anti travel sickness wristbands, they are called Seabands, they work on the pressure points inside your wrists to prevent nausea. If I feel nauseous, I find a cup of tea with one Rich Tea biscuit is guaranteed to settle the tum. Also, try listening to some classical music to calm yourself, I find Mozart works for me.

Sweetsnbooksnradio4 Fri 01-Dec-23 23:53:08

When I was pregnant I had hyper-emesis - I had rehydration sachets (glucose and electrolytes essentially). Check whether you can have them with your meds.
I had trouble keeping them down- but by dint of tiny sips regularly, I managed not to be in hospital on a drip at least some of the time.
You get into a vicious cycle where you can’t keep anything in - this is a way of trying to break it.

LovesBach Fri 01-Dec-23 22:42:47

I'm sure all the good advice here will help, and I just wanted to add that I'm sorry to read of your distress, both physical and emotional. Please do try counselling; it is far easier to open up to someone who isn't involved and who won't get upset to hear how difficult life is for you right now. These people are trained with the right techniques to help you cope, and they won't be in tears if you are. You can cry in front of them but we are all likely to bottle it up to spare our families. Take heart - there is help to be had.

Mamma66 Fri 01-Dec-23 21:13:28

‘Sick’ not ‘Dick’! 😂

madeleine45 Fri 01-Dec-23 21:13:26

It is horrible feeling sick and I sympathise. Having had various bouts of it myself. When I had cancer and was having chemo it was the worst thing to cope with. People kept saying oh you have kept your hair. Well I would rather have been bald than have the sickness so much. Anyway definitely I would go back to the doctors as it took them quite long time to find an antiemetic drug that suited me but eventually we found something that helped. I also sailed my own boat and didnt get seasick often but my husband said he didnt know if he got seasick as he always took the tablets beforehand and knew he would be ok with them . That could have been physical or pyschological as he just felt safe really by taking the tablets. So you are bound to feel anxious which in itself can make you tense and may make you more likely to be sick. So really getting some helpt to find an effective anti sickness tablet would be the best first step. Once you feel safe that the tablets will stop you being sick, then you will relax mentally and feel able to go out without the worry. for now you are in that vicious circle of staying in because you dont feel safe to go out, and then you feel awful staying in. somehow when you feel sick compared to other situations you cannot say to yourself oh in a week or whatever I shall feel better , I find. So the goal at the moment is to find that one medicine that will help you and then you will feel more in control of your life and be able to slowly do other things. I do wish you well and know how hard it is to get through it . If you like some particular music I would try and have that available to listen to and try to relax to when you wake up so that you dont stress yourself the minute you wake up expecting the worst. for me J S Bach is always wonderful and when I am very uptight for whatever reason, just trying to take good breaths etc doesnt work but the Bach always does and I can listen and relax a bit before I make the effort to get going. wishing you well and a speedy discovery of the best medication for you

Mamma66 Fri 01-Dec-23 21:12:35

Bless you, I really sympathise. I have been at home a week after 6 weeks in hospital, so know how you feel. I take Bisoprolol, when I first started taking it it made me nauseated and at one point when they upped the dosage I was just dick every time I took it. Firstly, I would recommend you spoke to your Cardiologist or Heart Failure Nurse. I did and they reduced and then split the dosage, which helped massively. I also bought some Rowntree’s fruit pastille ice lollies (the striped stick ones) following advice from another patient. It helped combat the nausea massively. I do hope that you soon feel better 💐

Rainnsnow Fri 01-Dec-23 19:40:26

Hyperemesis caused me to be like that during pregnancy. That and a bad heart condition can cause depression in people I carried high calorie foods about like nuts n dried fruits. I also added dried milk powder to bottle milk . Years later I’m still battling vitamin deficiency. It’s difficult to eat with no appetite and being sick . I wore a sickness wrist band ,ate ginger sweets and tried to rest more . I’m sorry u are going through this ,long term sickness is draining.

Grandyma Fri 01-Dec-23 19:16:28

DamaskRose thank you 😊
Farmor15 I think stress and anxiety play a large part in my problems but I’m also very sensitive to a lot of medications.
Nanascats I have heard of this tablet before. I will ask my GP - if and when I get to see him.

DamaskRose Fri 01-Dec-23 17:58:51

I have only ever suffered nausea after taking antibiotics so I can’t begin to appreciate what you’re going though. You do sound genuinely at the end of your tether and I’m glad there has been some good advice on here and that you’ll see someone on Monday. I just want to send my very best wishes and these virtual flowers I wish I could send some real ones.

Farmor15 Fri 01-Dec-23 17:55:38

I've been taking Apixaban for the last 3 years with no side effects. However, when I'm stressed I lose my appetite, suffer from nausea and lose weight. It used to happen when I was a student, coming up to exams. Later on, any stressful event would have the same effect. I wonder is that your problem Grandyma? - the stress you're under because of your health issues might be causing the nausea.
Medications definitely have side effects - Lanzoprazole gave me increasingly bad diarrhea which stopped a day or so after I stopped taking it. Also altered my sense of taste, reducing my enjoyment of food. But looking at side effects of Apixaban, nausea and vomiting is fairly low on list.