ME/CFS & Brain Fog

[AndBreathe]

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).

In my area, unless the lab form states the patient is taking T3, the lab decide whether T3 needs to be tested. If the patient is not taking T3, it will only be tested if TSH is high, and, or T4 is very much under range.

Bonkers, before the Endo started me on T3, my GP used to write the instructions in large letters on the form. The lab seemed to ignore them equally forcefully. 🙂

 

[TheClockworkDodo]

Same here, @AndBreathe - lab was requested to test my T3 several times and completely ignored request. It's apparently common for people with ME to be unable to convert T4 to T3 so there was particularly good reason for requesting T3 test, but lab seemed to think they knew better than GP and just didn't do it.

Now I'm on Liothyronine, the lab will test my T3. What's the point of their testing it now I'm taking T3?! Bonkers indeed.

 

[AndBreathe]

Same here, @AndBreathe - lab was requested to test my T3 several times and completely ignored request. It's apparently common for people with ME to be unable to convert T4 to T3 so there was particularly good reason for requesting T3 test, but lab seemed to think they knew better than GP and just didn't do it.

Now I'm on Liothyronine, the lab will test my T3. What's the point of their testing it now I'm taking T3?! Bonkers indeed.

I too am on Liothyronine too. The reason for testing it is to ensure the dose take in adequate, but not excessive, and to ensure it is being absorbed and utilised.

Like insulin, dosages are very personal. I take 50mcgr Liothyronine a day, for my T3 to be just into the lower range. Some on 5mcgr a day have undesirable palpitations, and need to pare back.

Whilst I am absolutely not in favour of the attitude that Doctor always being right, I do worry where the power lies in the NHS, with Receptionists deciding if patients need appointments, or faceless, labs deciding if tests need to be conducted and so on.

Anyway, this isn't Amitryptaline and brain fog.

 

[Lucyr]

I have given up on reducing the amitryptaline as the headaches were worse. Tempted to try more next (my prescription says up to 2 per night) in case better sleep helps the brain fog, thinking through the “unlikely to be a side effect if you’ve taken them for ages” point someone made.

 

[Lucyr]

I did email the ME clinic on Sunday as it had been a year since the referral without hearing anything. My GP last time had said that referrals do take a while now and to wait but I wanted an idea of how long to wait.

Someone called me back on Wednesday to apologise, they’d had a change of admin team and it seemed like my referral had been misplaced or something. I had a prescreening appointment with them over the phone yesterday and have an in person appointment with the dr on Wednesday to decide if it is ME and then will go over the treatment / management options.

 

[AndBreathe]

I have given up on reducing the amitryptaline as the headaches were worse. Tempted to try more next (my prescription says up to 2 per night) in case better sleep helps the brain fog, thinking through the “unlikely to be a side effect if you’ve taken them for ages” point someone made.

Now, @Lucyr , please, PLEASE don't consider this any form of criticism, but I wonder if some of your symptoms around these drugs are withdrawal.

I know my friend who had the most awful migraine - being hositalised more than once, had dire withdrawal when changing meds, to the extent she was hospitalised to be pharmaceutically supported through the processes.

 

[Lucyr]

Now, @Lucyr , please, PLEASE don't consider this any form of criticism, but I wonder if some of your symptoms around these drugs are withdrawal.

Whether it’s withdrawal or symptoms that are managed by the medication the decision is the same though? I can’t function enough to go to work if I halve the amitryptaline, I can function enough to go to work even though still not at my best with them, so keep taking the 10mg?

 

[AndBreathe]

Whether it’s withdrawal or symptoms that are managed by the medication the decision is the same though? I can’t function enough to go to work if I halve the amitryptaline, I can function enough to go to work even though still not at my best with them, so keep taking the 10mg?

For me, that wouldn't be the answer. I would be asking my doctor for help to explore other options.

Withdrawal suggests dependence to, me anyway, and dependence can often lead to an increasing tolerance to the substance (whether medications, recreational drugs, alcohol, or whatever), which makes it increasingly difficult to break the cycle.

I truly feel for you, but as someone who had many conversation with a friend who had been taking heavy medications to treat migraines, I have an inkling how hard these things are. With help, including inpatient treatment, for her, she managed to move forward, and away from the heavy meds, to no meds in turn.

 

[Lucyr]

For me, that wouldn't be the answer. I would be asking my doctor for help to explore other options.

Withdrawal suggests dependence to, me anyway, and dependence can often lead to an increasing tolerance to the substance (whether medications, recreational drugs, alcohol, or whatever), which makes it increasingly difficult to break the cycle.

I truly feel for you, but as someone who had many conversation with a friend who had been taking heavy medications to treat migraines, I have an inkling how hard these things are. With help, including inpatient treatment, for her, she managed to move forward, and away from the heavy meds, to no meds in turn.

I don’t think it’s withdrawal as 10mg is a tiny dose and reducing to 5mg should be a small change, 5mg amitryptaline isn’t “heavy meds”

 

[AndBreathe]

I don’t think it’s withdrawal as 10mg is a tiny dose and reducing to 5mg should be a small change, 5mg amitryptaline isn’t “heavy meds”

Bearing in mind we can have withdrawal from chocolate, dairy or whatever, I'd say anything is possible. It is also worth bearing in mind that a reduction from 10 to 5 mg is 50%. I wonder if a pill cutter could help explore a smaller reduction. Since I started on T3, I'm a demon with the pill cutter. 🙂

Personally, I hate taking meds and will always try to take as little as possible and try very hard to do without pain meds, but of course we're all different, and thankfully any periods of pain I have experienced have been associated with a "thing", like an accident or op, rather than a much longer term condition.

As I say, we're all different, which is always a good thing. 🙂