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Siouxsi profile image
32 Replies

hi

Just been put on amtriptyline and it’s making me feel completely spaced out, just wondered if anyone has tried alternative complementary medicine or supplements that help?

32 Replies
Camille1 profile image
Camille1

It takes a few weeks to get used to it. Stick with it, just let your GP know if you have any unexpected side effects.

How much are you taking and for what? Pain, sleep, depression or anxiety? Amytriptyline is often used "off label" for a variety of things from neuropathic pain to migraine prevention. It is very sedating and can definitely make you feel zombified the next day. I used to liken it to walking through treacle.

Often this only an issue in the early days. Try taking it in the early evening if possible so it wears off by morning. If you really can't get on with it then there's always Nortriptyline, a close cousin but less sedating and fewer side effects.

Siouxsi profile image
Siouxsi in reply to Sparklingsunshine

hi I’m on it for general symptoms but mostly pain. 10mg to titrate as needed. I’m taking it at 7/8pm. I’ve been on Nortrip before hence why I’m now on ami

Sparklingsunshine profile image
Sparklingsunshine in reply to Siouxsi

How long have you been on it? With any chronic illness its trial and error, I tried both drugs years ago for Fibro. I found Amytriptyline useful for sleep but not much else and after a while I built up a tolerance and had to keep increasing the dose, which led to more side effects.

I came off it in the end. Funnily enough tried both Amytriptyline and Nortriptyline recently as they are used as migraine preventatives and I couldn't tolerate either, even at low doses. If its not suiting you maybe call your GP.

Patdoyle profile image
Patdoyle in reply to Sparklingsunshine

can I ask did you taper coming off amitryptaline. I’m thinking of stopping it.

Sparklingsunshine profile image
Sparklingsunshine in reply to Patdoyle

When I took it for fibro I did as I was on quite a high dose, but when I took it for migraine prevention I only got to 30mg before I realised it wasn't for me so that one I stopped cold turkey.

may61 profile image
may61 in reply to Patdoyle

it should be slowly reduced Try half a tablet reduction a few days at a time My husband is bipolar and has 3 anti psychotic drugs including lithium they need to be reduced gradually preferable

Siouxsi profile image
Siouxsi in reply to Sparklingsunshine

oh the funny thing is I don’t feel sedated when I take it, in fact it’s keeping me awake and making me feel hot. It’s very odd

Blearyeyed profile image
Blearyeyed in reply to Siouxsi

That is the symptoms I had too. May insomnia got worse and I had swings in temperature because of the way some people's autonomic nervous system reacts to Triptans. It actually made my pain and migraines worse because of increased lack of sleep . I also suffer from Dysautonomia and it increased my heart rate more causing palpitations.What works for one person will not automatically work for another , we all have individual medical needs.

Definitely return to your GP explain the symptoms and ask to try another medication. Garbapentin, Pregbalin or Duloxetine, or a combo of these, often help with pain and fatigue for many. Request lowest doses first then work up if required when you know you can tolerate a medication. Many doctors prescribe the final or higher doseage of a medication too early so you don't get chance for your body to adjust to the change. This can cause you to have more side effects like nausea or being spaced out which can actually put you off continuing a drug which on lower doses with the right self care pacing your activity could have ended up being just what you need.

Some people also find help taking an antihistamine before bed ( it can help insomnia) , and an antacid in the day , this works if part of your Fibro issues are linked to hypersensitivity or histamine intolerances.

Natural pain and fatigue relief can take time it involves creating a Self Care programme that can be individual to you . Low vitamin and mineral levels despite a good diet can happen with Fibro and increase symptoms , so a combined supplement taken after a meal can help. Additional Vitamin D , Vitamin C , B Complex , just Omega 3 can also help. Water is vital in body function and drinking the recommended fluid each day is vital to help reduce fatigue , pain and other symptoms . Avoid Omega 6 as it is a proinflammatory and can trigger more pain.

Diet changes that can help include reducing your use of processed sugar to rare treats , avoiding processed ready meals and artificial sweeteners and flavourings. Reducing your carbohydrate intake and using complex carb foods like wholegrain , wholewheat , skin on potatoes , brown rice , oats etc. and having rare portions of the " white" carbohydrates. Totally Gluten free or Lactose free will only help if you have an intolerance to these foods or illness related to them, it is well worth getting yourself tested for these intolerances before cutting them out altogether. Reducing gluten foods often also reduces how many "white" carbs you have so that has a knock on effect to making you feel better. Eating a diet packed with vitamins , minerals and good fats and proteins, like a Mediterranean style diet, can help keep your body healthy enough to deal with the pain and symptoms that occur or make these less severe.

Some people get some relief from garlic , probiotics, Turmeric , and combined amino acids , but you do need to be sure that you can take these before starting them , and check if you can take them with certain illnesses or other medications.

It takes 2-3 months of consistent use supplements before you can say if it is making any difference that is significant , and supplements are just drugs under another name really , so they can also cause some side effects as your body reacts to a new thing and can take a few weeks to reduce , sometimes the side effects show intolerance and you need to stop it.

Pacing your daily activity , creating a balance between relaxation or rest and action and working out what triggers you pain and avoiding that activity , or adapting how you do it is the most important self care thing we need to do , even if we take medication. Pacing yourself right can reduce flares and daily pain by as much as 50%. Doing some gentle exercise within your comfort zone to maintain muscle strength and flexibility is also helpful for reducing Fibro symptoms and pain. Breathing exercises , Mindfulness and learning ways to deal with Stress ( good or bad overactivity if brain or body) such as CBT also help reduce pain and fatigue caused by tension or rapid nervous stimulation.

Hydrotherapy, TENs units for some , Acupressure, other complimentary treatments like Steam , Ultrasound or light and sound can all beneficial, but any of these needs to be tested with very short tasters and built up to see if , like a medication , it works for you .

Don't expect to be 100% pain free. You aim to be Pain Managed , 85% pain management each day while maintaining a well paced quality of life is a success. Fibro does involve the need to change habits and activity.

Hope you find what works for you , and don't give up on prescribed medications straight away , even if you don't take them all the time , finding the right combination can make that added bit of difference to your daily pain level and how much you can manage to do each day.

Dizzytwo profile image
DizzytwoModerator

Hi, I believe it can take up to 6 weeks to see if it can help or get over any side effects.

If you are still having problems with the medication after that. May I suggest you go back and discuss it with your GP.

Momo

Rainbowangel profile image
Rainbowangel

I found out my Fibro was linked to histamine intolerance and take FibroDAO which is an enzyme which breaks down histamine that some poeple wich FMS can be lacking. I find them effective but expensive!

JulieFitz profile image
JulieFitz in reply to Rainbowangel

Is fibroDAO a prescribed medication or something you can buy?

Rainbowangel profile image
Rainbowangel in reply to JulieFitz

Hi JulieI got it from Amazon, they do one aimed at Migraine suffers too, which I ended up getting weekly. Took a long time and a lot of detective work to find out Histamine was contributing to my fms/migraines

Alanna012 profile image
Alanna012 in reply to Rainbowangel

I have histamine intolerance too. But it took a serious breakout of urticaria for me to finally put the pieces of the puzzle together. Do you have/ have you heard of Mast Cell Activation Syndrome? How long before you started noticing a difference taking DAO, and did you need to adjust your diet?

Rainbowangel profile image
Rainbowangel in reply to Alanna012

No particular diet but I try to avoid high histamine foods.Been taking for a few months and along with tri mag magnesium patches,I have much less pain and the migraines have resolved.

I have broached the subject of mast cell activation syndrome with my GP but was ignored! :)

Alanna012 profile image
Alanna012 in reply to Rainbowangel

🙂 Thank you! I take magnesium breakthrough but hadn't considered patches....perhaps they might work better.

I wouldn't have even bothered raising MCAS with the GP, apparently they are supposed to know about it but many don't. I went A&E with angioedema and mentioned MCAS and the A&E consultant brushed me off with 'well... you're talking specialist areas now.' brilliant.

I'm paying my last farthing to see a private specialist in February. Just so I can get some advice. It annoys me that I'm having to do so much on my own, including buying my own thyroid meds already.

Rainbowangel profile image
Rainbowangel in reply to Alanna012

I buy my own thyroid meds too. Been on Armour for a year! : (

Alanna012 profile image
Alanna012 in reply to Rainbowangel

It's a disgrace really. Armour is expensive. I'm taking NP which used to be the more affordable one, now ridiculously gone up in price too!

Rainbowangel profile image
Rainbowangel in reply to Alanna012

Could you possibly private message me which specialist you are seeing? If it's RE mast cell activation/ histamine intolerance I would be interested myself, thanks

1whitestar profile image
1whitestar

I was offered this but there was a delay so they offered duloxine witch has helped . I hope it gets better see how it goes.

JustAnotherOne1 profile image
JustAnotherOne1

I use black seed oil and wild oil of oregano as supplements, both are incredibly powerful aids to mature and worth reading up about

Alanna012 profile image
Alanna012 in reply to JustAnotherOne1

I've tried oregano oil. I waited. Nothing changed. Was it the wrong kind? What brand do you use?

JustAnotherOne1 profile image
JustAnotherOne1 in reply to Alanna012

The one I use is from Spring Blossom Superfoods, I think theres a difference between wild oil of oregano and oeregano oil but im unsure what the difference is but its the levels of carvacrol and thymol thats important. Ive been using that and Blackseed oil for the past year and one the other or both have improved my digestive system

Astra67 profile image
Astra67

hi I was on that medication it never worked for me and I didn’t have any side affects

rosewine profile image
rosewine

That sort of medication has never suited me. I do use Coenzyme Q10 for muscular pain in my legs and it has helped. I did t see that much difference for about a month. I thought it wasn't making much difference so stopped it and realised it had been helping me quite alot. I try to keep my weight down, do stretching exercises and have a walk every day. I often have to initially walk through pain and then it does start to ease. I also eat alot of fruit and vegetables as when you feel low though the fatigue and pain it is easy to eat unhealthily. I tried CBD but all it did was upset my stomach and onky had a very limited affect on the pain. Good luck with whatever you try.x

BlueTofu profile image
BlueTofu

I couldn't take amitriptyline as it zonked me out. I'm on Nortriptyline, but had to cut it down to 2.5 mg, because of side effects, and gradually build up to 10mg, which I've stuck at.

Turquoisesummer profile image
Turquoisesummer

I tried amytriptaline for 3 days, it was as long as I could tolerate it, and in those 3 days it made me feel suicidal and made me dissociate like crazy, but did help me sleep and numb some pain. Wasn't worth it. Doctor said it shouldn't even affect me so soon. Best alternative/natural help I've found is sauna at least every 2nd day and lots of stretching and movement, even though it hurts. I know it's not "medicine" but I don't know if there is really a useful medicine for this condition😕🙃

JazzElvis1 profile image
JazzElvis1

yes, it does the first week or two but by the forth you will feel ok and More positive , less pain , with any anti depressants the weeks are normally horrible, but well worth the wait to week 4-6 , I would live without them now, most of time pain free

Princess61 profile image
Princess61

Hi siouxsi I take amitriptyline for fibro restless legs, worse at night, up to 50mg, I take highest dose when I've been to work, helps with excess pain and helps me sleep. Takes about 6 weeks to work. Haven't seen much side effects, so they help me.

fmlife profile image
fmlife

I take anti histamine cetirizine due to allergies, and promethazine elixar for sleep, never thought of antihistamines helping fibro before.

am not on any depressants, however did try most of them with the second rhummy to try and relax to sleep, was one at a time, its best to have support when coming off, going cold turkey is not great. be kind to your self.

Pbyllis profile image
Pbyllis

Hi that feeling doesn't last I'm on 70mg a night and I do not sleep well but I find it good for my nerve pain

Mrdiagnosis profile image
Mrdiagnosis

I was very spaced on this . Also made me paranoid and aggressive. Wasn't a good fit for me . But many people have found it helpful.

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