ME/CFS & Brain Fog

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Lucyr

Lucyr

Well-Known Member
Relationship to Diabetes
Type 1
Not exactly diabetes related but does anyone take amitryptaline?

I’ve been taking it to prevent pain (headaches) for about 12-18 months i think. I think that changing diet has helped my headaches as well but I’ve kept taking the amitryptaline (1x10) daily. I managed to reduce from 2 to 1 ages ago.

Recently, a month or two, I’m struggling with lack of mental clarity. I’m making stupid mistakes at work, losing track of what I’m doing at home, generally brain isn’t feeling like it should.

I don’t know if this is a diabetes thing (reducing bgs lately), or just an effect of the potential ME, or a side effect of the amitryptaline (I’ve read it listed as a potential).

Has anyone ever experienced and improved this? I’ve tried reducing the amitryptaline before but made the headaches worse and had to go back up to 1x10, it seems to take a long time to have full effect again too.

All I can think of to try is minimise bg spikes and try halving the amitryptaline?
 
Iv been on amitriptyline and I suffer with fibromyalgia , I have the brain fog with and without tablets, I found amitriptyline wasn't strong enough for my flareups I was on 30mg.
I'm now on 60mg of nortryptaline ( a different ish but same as amitriptyline) I think if you have ME your always going to have days like this as it one of the symptoms of it, and it doesn't get any better no matter what drugs you take. You just have to get on with it and put up with it. I hate the days like that when you don't know if your coming or going. Depending on your age it can also be a symptom of perimenopause. Untill you get a ME diagnosis your not going to know. Hope you find out soon.
 
I took it many years ago for hip / back pain and I had to stop as I was like a Zombie. Tramodol was ever so slightly better but made me feel nauseous at times. Mind you I can get like that on a once a day ( supposedly) non drowsy antihistamine! It probably varies quite a lot between different people but don’t know why. But it wasn’t for me. I hope something better can be found for you.
 
I find that when I start taking Amitriptyline I feel very groggy and soporific but after a couple of days it starts to wear off. I haven't taken them longer than a week to know if there are long term effects like that but I would have thought that they lessened the longer you took them, considering that's what happens in the first few days, but that is using logic and the body rarely reacts as you expect it to. It must be worrying when it causes you to make mistakes at work.
 
Hi
I have ischaemia from my diabetes in my brain and causes brain fog and memory issues and chronic migraine, blood sugar control does have an impact for me.
10mg is a very low dose of this medication, I was on 150mg previously now on 30mg, very alert on this low dose but does nothing for pain. Was told me/cfs and fibromyalgia until mri last year showed the ischaemia.
Would check in with your dr, also have had perimenopause highlighted to me as started with symptoms two years ago age 42 but scan obviously ruled that out too.
 
Thankyou for your thoughts. I don’t think it should be perimenopause as I am 35. Maybe it isn’t the amitryptaline as I am on a very low dose, but the side effects when I come off it mean it must be doing something.

@rebrascora i didn’t know that they could be taken just for a few days, I thought they were long term medications. Can I ask whether they work taken only short term?

@Old-tyme-vampire-lady I’ve been waiting to hear from the ME clinic for over a year, I haven’t chased it up as I don’t actually want a diagnosis of ME unless I need it, so thought I’d give it a while to improve first. Now at 1yr9 months of post viral fatigue symptoms though. The problem is that it isn’t bad brain fog days, it’s permanently mild bad days that are either a bit worse now than they used to be, or I’m noticing them more now the headaches are better and I’m back at work full time.
 
I agree it must be doing something but that doesn’t necessarily mean you will or won’t get side affects.

I would follow up with both me clinic and Gp and me clinic and highlight the headaches as ischaemia has potential risks and if your sugars have been uncontrolled then is worth getting checked out, I believe it can be triggered by uncontrolled blood sugar too. No harm asking about perimenopause, a friend of mine was diagnosed in her very late 30’s, think was 39, does always mean absent or irregular periods, can be other symptoms
 
Sarahp said:
I would follow up with both me clinic and Gp and me clinic and highlight the headaches as ischaemia has potential risks and if your sugars have been uncontrolled then is worth getting checked out
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What’s ischaemia? I’ve had a brain MRI which was normal so guessing I don’t have this?
 
Lucyr said:
What’s ischaemia? I’ve had a brain MRI which was normal so guessing I don’t have this?
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It’s a tissue damage to the brain, can be triggered by diabetes or uncontrolled blood pressure, neurology told me first sign can be chronic migraines, wouldn’t wish on my worst enemy. If headaches are fairly new since mri then worth a re check, either way definitely follow your referral up, have me and cfs too and it’s not nice at all.
 
Sarahp said:
It’s a tissue damage to the brain, can be triggered by diabetes or uncontrolled blood pressure, neurology told me first sign can be chronic migraines, wouldn’t wish on my worst enemy. If headaches are fairly new since mri then worth a re check, either way definitely follow your referral up, have me and cfs too and it’s not nice at all.
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The headaches are the reason I had the MRI, about 18 months ago now
 
Lucyr said:
The headaches are the reason I had the MRI, about 18 months ago now
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Hopefully then they ruled this out then, glad to hear that as it’s not fun and even affects my memory. Hope you get some relief and answers soon!
 
I guess it depends what you take the Amitryptaline for. I have used it both for severe back pain and sciatica and anxiety and for eac,h I took it for as short a time as I needed it, to get me over the worst of the symptoms. The first night and day I am pretty wiped out with it but by the third day I am not nearly so groggy. As I said, I don't know how I would react longer term because I haven't needed it beyond a week or two.
 
@Lucyr I’ve been on amitriptyline since 2009 I think and I do get brain fog, however I had brain fog before I started the medication. Interestingly, I was prescribed it a year after I was (mis)diagnosed with ME/CFS. What time of day do you take it? I used to take it at 10pm and struggle a bit in the mornings. I now take it 6.30/7pm and feel relatively clear headed/alert by the following morning. Not sure if that helps but I hope either way you can find something that eases your symptoms x
 
@Lucyr I had amitripyline once to help me sleep at night and I hated it - I was on the smallest possible dose and it turned me into a complete zombie during the day, I didn't know what I was doing half the time. I stopped it as soon as I could and changed to herbal sleeping pills instead (passiflora).

If you have ME you are likely to need much smaller doses of meds generally, the protocol is supposed to be to start with one tenth the normal dose and work up.

But brain fog is one of the commonest symptoms of ME, so as this is recent for you and you've been taking the amitriptyline for some time without having issues with that, it may be that you are overdoing things (mentally) and need to rest your brain a bit more, in the same way you would if you were physically exhausted and needed to rest your body. Resting and pacing yourself are the key strategies for managing ME, and the primary symptom of ME is post-exertional neuro-immune exhaustion - that includes mental exertion as well as physical exertion. I hate to say this but it may be that going back to work full time is a bit too much for you. I can't think of many people I know with ME who have managed to work full-time with it, or even work at all with it, it's a very serious condition.
 
Thanks @TheClockworkDodo I have been busy lately so it could be due to overdoing it. I’m still not convinced about whether or not I do have ME. It’s so much better than it was at it’s worst and feels more like a post viral fatigue that’s taking a couple of years to get over, but then I know that’s not a thing and it becomes under the ME label when it’s taking that long (I think anyway).

I’ve sent an email to the ME clinic asking for a status update as it’s been a year since referral without hearing anything. I’m trying half an amitryptaline (so 5mg) for the second night tonight and I might see about taking more breaks at work to see if that helps at all.
 
@Lucyr - when was your thyroid function last checked properly? By properly I mean not just TSH, but the actual thyroid hormones.

Brain for is a symptom of thyroid challenges.

I'd be looking to start with a full blood panel, including vitamins and minerals, and hormones, and go from there.

On the side note of your migraines, I know of a few folks for whom low carb has transformed their migraine experiences. One friend was on maximum, heavy duty painkillers for year, but going low carb, they went. Totally.

Of course, we are all different, but many folks appear to have unidentified nutritional triggers for migraines.

Sorry, no wisdom on Amitryptaline. I have been fortunate enough never to have taken it.
 
AndBreathe said:
On the side note of your migraines, I know of a few folks for whom low carb has transformed their migraine experiences. One friend was on maximum, heavy duty painkillers for year, but going low carb, they went. Totally.
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I am one of those lucky people. Suffered acute migraines for more that 20 years and frequency had increased to about 1 a month prior to diabetes diagnosis. and they were getting dangerous as I was vomiting and passing out with them. Totally stopped when I went low carb. I have had 1 minor one in the last 4.5 years after I lost control of my diet and had a bit of a binge for a couple of days.

Not sure this will help @Lucyr though as I believe her carb intake has been quite moderate in recent times anyway but I understand she is trying low carb again now.
 
yes I am trying to low carb but with varying success as it makes me feel worse. Was off work sick on Wednesday this week as i did manage a very low carb day with about 60g carb on Tuesday and felt fine during that day but woke up early morning next day Wednesday with an absolutely blinding migraine, had to take all day off sick and have been craving carbs and not managing to low carb since.

This is generally how low carb goes for me, today I’m trying to low carb again as the carb cravings are an issue the last few days, so far 2 coffees and time for some lunch soon.
 
The migraine Wednesday sounds like withdrawal symptoms, Lucy - I wonder if there's something you eat or drink regularly which gives you migraines whenever you don't have it - in which case the thing to do would probably be to go cold turkey and put up with the migraines for a few days (easier said than done, I know) in order to not have them in future, because if that's the case, once it's fully out of your system they should stop. Only works if you can identify the trigger though.

I take Anadin Extra for severe headaches/mild migraines (GP thought migraine but I'm not convinced they're that bad) and that is a two-edged sword for me as it gets rid of the headache but if I don't take it the headache comes back worse. I did manage to go cold turkey off that once but made the mistake of going back on it again. I imagine it's the caffeine withdrawal which means the headaches get worse if I stop it.

Btw, I know hypothyroidism symptoms overlap with ME symptoms - I know someone who was misdiagnosed with ME and turned out to be on wrong dose of thyroid meds - so I'd agree with @AndBreathe that it's worth getting your T4 and TSH checked if not done recently (they probably won't be willing to check T3, but if you're getting others done, you could try asking for that as well).
 
Had my thyroid checked 2 weeks ago (went for my quarterly tests for high white cells but they weren’t in the system so had diabetes ones instead) but results aren’t in the NHS app yet.
 
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