brain fog

[rajsam]

Hi , I have severe brain fog and dizziness, ive had 5 rounds of Decapeptyl injections and I am feeling very anxious and weird!! Ive also just had the mirena put in.. Imnot sure if the mirena or injections are causing this feeling?? anyone else felt this way?

[JulesUK]

At my worst I had brain fog all the time and dreaded having to do anything in the morning as I noticed it was always worse. My brain fog isn't as bad whilst on the coil but I am quite tired. Are you getting enough sleep?

[rajsam in reply to JulesUK]

Hi, I have not been sleeping OK, I'm just not sure if its the mirena or those injections.. I feel so down too... i have my last injection this week..

[JulesUK in reply to rajsam]

I felt down on my injections and tired. The coil has been good for me I hope it works for you too.

[Fabbird in reply to rajsam]

Hi, perhaps the brain fog is mostly to due to poor sleep? From what I have read there is a strong relationship between sleep and mental functioning.

I've not had the injections but I have used the Mirena long term. I think I noticed a slight dip in my mood in the first few months of the coil, but I seemed to adjust and it hasn't been a problem since. It didn't affect my sleep at all. However I think we vary in sensitivity to these things so you will need to judge for yourself. At least with the injections finishing you should soon be able to tell how much of it was due to them?

Hope you feel better soon.

[rajsam]

I'm quite an optimistic person and I hate feeling this way. I work 2 jobs and Im struggling with every day activities.. thank you everyone for your support. x

[Starry]

Brain fog is NOT caused by lack of sleep. It's more than likely to be the GnRH treatment. It IS a recognised side effect of these treatments which are very powerful and should be taken seriously. You should notify your consultant straight away and seek advice. You may need to start or increase your hrt.

I suffered brain fog severely on GnRH treatment. This included concentration and cognition issues, memory loss, confusion even difficulty in putting a sentence together. So much so that I struggled to function day to day. After doubling the tibilone my symptoms reduced considerably. I ended up stopping my treatment as I found the side effects too disturbing, but that is a personal decision depending on your symptoms and pain.

Below is an extract from the PIL, which lists brain fog symptoms in the uncommon section, so it is a good idea to report them through the yellow card link. I recommend you read the leaflet in full.

"Reporting of side effects

If you get any side effects, talk to your doctor, pharmacist or nurse. This includes any possible side effects not

listed in this leaflet. You can also report side effects directly via the Yellow Card Scheme at

mhra.gov.uk/yellowcard

By reporting side effects, you can help provide more information on the safety of this medicine.

WOMEN

Many of the side effects are expected due to the change in the level of oestrogens in your body.

These very common side effects (may affect more than 1 in 10 people) include headache, decreased libido,mood swings, difficulty in sleeping, breast disorder, ovarian hyperstimulation syndrome, pain during or after sexual intercourse, painful periods, genital bleeding, pelvic pain, dryness of the vagina, excessive sweating, acne, oily skin and hot flushes.

Side effects which are common (may affect up to 1 in 10 people) are breast pain, muscle cramps, painful joints,weight gain, feeling sick, depression, nervousness, abdominal pain or discomfort, pain, bruising, redness and swelling at injection site, swelling and tenderness, allergic reaction, pain in the arms and legs, dizziness.

Side effects which are uncommon (may affect up to 1 in 100 people) are feeling your hearbeat, vertigo, dry eye,blurred vision, bloating, vomiting, diarrhoea, dry mouth, flatulence, mouth ulcer, weight decrease, decrease in appetite, water retention, back pain, muscle pain, abnormal taste, loss of sensations, temporary loss of consciousness, memory loss, lack of concentration, tingling or numbness, involuntary muscle movement, mood change, anxiety, disorientation, bleeding after sex, prolapse, irregular period, painful period and heavy period,small cysts (swelling), on the ovaries which can cause pain, discharge from the vagina, difficulty breathing, nosebleed, hair loss, dry skin, excessive bodily hair, brittle nails, itching, hives and skin rash.

During post-marketing surveillance the following side effects have also been reported: general discomfort,increased blood pressure, increased body temperature, anaphylactic reaction (serious allergic reaction which causes difficulty in breathing or dizziness), some blood tests affected (including raised liver function tests) muscle weakness, confusion, absence of menstrual periods, rapid formation of wheals due to swelling of the skin or mucous membranes, abnormal sensations in the eyes and/or changes in sight."

medicines.org.uk/EMC/medici...

[NoEndoInSight]

Hello, sorry to hear you are having such a tough time at the moment.

I'm 100% with with Starry on this - you you definitely should let your specialist and GP know asap about all of the side effects you are experiencing on Decapeptyl.

Decapeptyl is a "GnRH Analogue/Agonist". This class of drugs suppress your body's production of oestrogen / progesterone and thereby your monthly cycle. This can bring relief from cyclic Endometriosis symptoms, but (as with all medications) "GnRH Analogues/Agonists" have side effects; as well as a potential loss of bone density, these drugs are known to cause hot flushes, severe sleep disturbances, brain fog (memory problems/poor concentration/confusion), and significant mood changes (including depression and anxiety), as well as fatigue, syncope (technical term for fainting).

Many of these particular side effects are caused by the hypoestrogenic (oestrogen-deficient) state "GnRH Analogues/Agonists" induce, which is why so many specialists prescribe them along with complementary dose of "add-back" HRT. The HRT is supposed to "add-back" enough oestrogen to ease some of Decapeptyl's more unpleasant side effects without reactivating the growth of Endometriosis. But every women's body is unique and it can take a bit of experimentation to find the right "add-back" HRT dose - some women need just a low dose of HRT, while others find that their body requires a higher dose of HRT "add-back". And there are some women who find they cannot tolerate GnRH Analogues like Decapeptyl at all with or without "add-back" HRT because of the severity of the side effects they suffer.

You definitely should let your specialist and GP know asap about all of the side effects you are experiencing - especially if you feel you are suffering mood changes and brain fog. They may decide to give you some "add-back" HRT or offer other ways to control the adverse effects you are experiencing. They should also be able to provide you with appropriate and effective emotional support to help you cope with any cognitive / mood changes you suffer while you are undergoing Decapeptyl treatment. Or they may advise you to cease treatment.

I'd definitely recommend printing off the medicine.org link Starry sent through and taking that along to your GP / Specialist with you so that you can ensure they've got a copy of the manufacturer's most up to date advice on Decapeptyl's side effects. If they are still unsure how to proceed then your GP / Specialist can contact Decapeptyl's manufacturer (Ipsen Pharma), as all the big drug companies employ pharmacologists whose job it is to offer advice to medical professionals about the drugs they produce and how best to manage any side effects cause by those drugs.

In the meantime just know that you are not alone in experiencing these type of side effects, there are lots of us who have. Take care and be kind to yourself, especially with the anxiety symptoms. Watch a favourite film, see family and friends, get out in the sun for a bit, or maybe indulge in a little bit of cake - whatever lifts your spirits. I'd also recommend you print out that patient advice leaflet Starry sent through (and also the Decapeptyl "Special Product Characteristics" for medical professionals which is also available on Medicines.Org) and maybe give those to your family, friends, (possibly also your employer) as well as your GP and Specialist, so that they can get up to speed on Decapeptyl's various side effects and help support you while you are living with them.

Good luck & I hope you feel better soon, x X x

[Bethleah]

II get this anyway but the cerezzete then zolodex made it far worse. I'm off it all now but my consultant keeps pushing for me to take the zolodex which I have stopped after 5 doses. The hrt also didn't help. My eyes are brighter and the fogginess is improving.

[rajsam]

thank you everyone for your replies... I was given some hrt, Livial when I first started taking Decapeptyl but it made me feel worse so i stopped. I am going to try taking it again to see if makes any improvement now ...