wellbutrin and/or tricyclics for brain fog

new to the forum, hi all. I'm tom and CFS came into my life aged 20 and has long overstayed its not being welcome in the first place! 15 years now, many of them hellish. My most troublesome symptom is fatigue mostly cognitive which not only has my brain work at 1/3 pace but has taken hostage my spontaneity, ability to make decisions, wittiness and my general laid back happy go lucky self so my personality. I am now but a reclusive stress ball! I have tried most things in the book alternative and drugs and the only relief i've had has been from antidepressants. Citalopram got me to about 80% for a good 4 years before pooping out and more recently Duloxetine to perhaps as high as 85%! before pooping out after only a measly 4 months. In between and since duloxetine I have tried all the SSRIs, venlafaxine and a NARI reboxetine licenced here in England where I'm based, but to no effect.

The only drugs left for me to sample are the tricyclics and wellbutrin.

I hear Wellbutrin can help clear the fog however is only licensed for smoking cessation in the UK. With that, have any UK based people been able to get hold of it? I'm weary ordering off 'no prescription needed websites'. Any ideas anyone how I might be able to get hold of it?

Re the tricyclics, they seem to be more useful for sleep and neuropathic pain. Have any had success with them helping with brain fog? If so any particular tricyclics?

I know these drugs just treat symptoms but any relief is welcomed. I'm toying with the idea of rituximab as a potential "cure" but a long way off being able to afford it.

Thanks for any pointers

Tom

Welcome to the forum, sorry you have been suffering for so long. I have only been suffering for 9 years now. Have you tried LDN? (Low Dose Naltrexone). You can get it in the UK. FYI

GG

Sorry Tim. The only response I've ever had to tricyclics has been terrible increased grogginess, weakness, fainting, problems thinking (what I call "brain death") and stomach bloating/blockages. These got worse over time rather than better (the doctors tried to tell me otherwise but they were proven wrong). Took years to recover and my stomach has never been the same.

Hopefully others will have an idea of why some AD's help you and why they pooped out in the end!

Hi GG, haven't tried LDN, imagine it will be a battle to twist my GPs arm into trying me on it but whats another battle! How has it helped you?

Yes Tricyclics aren't as 'clean' as SSRIs so not surprised you experienced all those s/e. But with my response to ADs I will prob have to give em a go. The AD pooping out phenomenon is recognised but like so much of medicine not known why. I tried them again after a holiday from them but no joy. Back to drawing board!

Hi Tom
I'm taking Amitriptyline 50 mg nocte for pain management. I started on 10mg but that didn't help much, raised to 30mg which did help for a long time; though I can't remember how long. I had a major flare just over 2 years ago and have been on 50 mg ever since. It helps the pain a lot; although I am certainly not pain free. It also helps sleep - up to a point.
I did have side effects to begin with - "zombie head" - but that wore off and now I just have my usual fog and forgetfulness. Recently memory and fog is worse but I tend to think that's because I am getting slowly worse, rather than the drugs doing this. Nevertheless I take drug holidays to see how life without all of them would be. I learn that life is ugly without drugs.
As you would be taking a lower than depression-therapeutic dose you may not get as many side effects, but some people react badly to it and to any tricyclic AD, regardless of dose.

Florinef does more for me than wellbutrin. Like anything with such a wacky disease it is worth a try though.

Hi Shell sorry for late response. Yes tricyclics seem more useful for pain and sleep than the fog. Glad you're getting some benefit from them. Nortriptyline I understand is less sedating so may try it out. I'm always reluctant to take meds but then like you say when on nothing realise that nothing wont do! Glad you get some benefit from them.
XKS are you on Florinef for POTS symptoms? Interesting it helps with cognition. Is the thinking that by improving intravascular blood volume it then improves cerebral blood flow and washes away the fog! Wacky it is and the guinea pigs we are!

Checked your thyroid function lately? (Free T4, Free T3?)

yip, thyroid is and has always been normal - wish it wasnt and it was the problem, be a lot simpler!

I took wellbutrin sr for a number of years. it was very helpful for having dopaminergic as well as norepinephrinergic qualities. it was l licensed first as an anti-depressant in the us, so I would be surprised if there is no version in the pharmacopia in the UK. that was so long ago it lost its primary patent protection about 20 years ago and they had to come out first with the sr and then the xl and finally the anti-smoking versions to keep patent protection. It may be that the NHS just doesn't bother with it anymore. However they should be able to get plain or extended (sr)very cheaply. I didn't care for xl -- lasted too close to my bed time.
I have a psychologist friend who takes it for non-ME reasons. she thinks it is really well suited for her. I think that is a compliment -- a professional choosing it, though in this country as a PhD she has to get a prescription from a psychiatrist who is an MD.
If I were you I would look into the NHS situation again to make sure your MD isn't just in the habit of thinking of it first and foremost for smoking.

if citalopram helped u in the past and it has been awhile since u used it, maybe try it again, sometimes these things stop working due to drug tolerance and taking a long break will reduce this drug tolerance. If/when it poops outs again then try duloxetine as the long break from it will have hopefully reduced your tolerance to it??

On docs advice, you could look at adding 5htp for serotonin and acetyl tyrosine for noradrenaline. Antidepressants are sort of like the accelerator, eventually u run out of fuel, adding in the 5htp and tyrosine is like filling up the tank again. But do all this on your docs advice as it will have a possible risk of serotonin syndrome. When attempting something like this its best to start with low dose of an AD and a low dose of say 5htp and adjust it from there.

cheers!!!

I only had one Tricyclic which I could tollerate but unforunately found it was no help for me in anyway at all. (In my case I havent been able to handle any of the SSRIs and they have made me a lot worst or given me severe side effects.. I once ended up in hospital for a week after taking one of those).

Amptriplyine..as another mentioned can have severe side effects for some of us (thou many ME/CFS specialists do use it in ME/CFS patients)... I trialed that up to 50mg for sleep.. it had no positive effect in my case at all on any of my symptoms and after trialing it for several weeks.. I ended up with a prolapsed bowel due to it (which I then ended up having issues with and having to see specialists for.. for 4-5 mths after I stopped it as the effects it had on my bowel peristalisis..it has a physiological affect of slowing that, stayed even after I stopped it. So I strongly recommend people ..do not trial it if you have IBS-C!!. Note I trialed it in low dose and for only a few weeks and ended up with severe issues due to it...not realising that my worsening constipation issues were being due to it till my bowel was damaged.

Another at this site ended up with a permanently paralysed bladder after taking it. In the new International ME guidelines I was happy to see they mentioned the possibly of Amptriplyine severe side effects in some of us). But some of us do find it helpful and of cause it isnt going to cause issues for all of us (not sure thou about it helping brain fog thou..most who take it take for other reasons, Im not aware of it helping brain fog in anyone).

For myself.out of the crazy amount of things Ive trialed. the only three things which have ever helped my brain were
- a juice fast of certain fresh organic juice combos (sorry I forgot which now but other juice combos didnt do a thing..so not all freshly squeezed fruit or veg juices are equal),
- B12 injections twice a week (I had positive brain affects after the 3rd or 4th one)
- molybdenum supplementation (it turned out I had a deficiency of that essential trace mineral and that one is very important to our bodies for detox). I take a supplement called molyzinc (that had very noticable effects in my case after only 4-5 days.. I found out about the deficiency by hair analyses).

ahh and not staying on my feet too long so my POTS dont go flaring up is helpful some too brainwise (I suspect if I had better POTS treatment my brain would be more helped).. consider if you have low blood volume playing a part in your brain issues. Consider too if you could have a food intollerance making affecting your head all the time.

Hi Debrouth, thanks for suggestions. I did approach my GP who asked a psych as although not licensed for depression docs do prescribe drugs off licence here. However the psych doesnt use it and so they wont offer it. Instead they offered me amitriptylene as I havent tried tricyclics. However amiptriplyine having sedative properties is more useful for insomnia, I am the opposite so I imagine it'll make things worse which I explained but thats all they have for me! And yes Tania I havent heard of it helping brain fog in others and more so it causing problems as it did with you. I'm seeing my CFS specialist this week and will ask him however he is an immunologist who has only offered in the past B12, steroids and probiotics! I doubt he'll prescribe it in which case I become a smoker! Its incredible the brick walls they put up especially in the UK, however they dont realise how determined we are and we will scale them just with a lot of effort!

Heapsreal good suggestion. I have though re-visited them after a good years break but didnt help. I've also tried the 5htp and tyrosine too but nothing. There must be an issue though with my neurotransmitters to have had such a good response with all symptoms to ssri/snri in the past. But what is the problem and how to reverse it?! If its genes I might be stuck. If its auto-immune possibly affecting receptors maybe more of a chance but would someone find these auto-antibodies and soon and wipe them out! Rituximab??

Tania thanks for your input. Yes I'm reluctant to try amitriptylene and so will put it at the bottom of my ammunition pile. I did have an initial slight improvement with B12 but then nothing. I do have POTS symptoms, less so now than initially but unfortunately in trying to keep up appearances have been on my feet more than off them and I think this has contributed to my brain fog. I have tried increasing salt intake and binders but didnt help. When life has been quieter my brain though did seem to do better. Doesnt seem possible to quieten it now though. And yes have tried eliminating gluten, sugar, caffeine but to no effect.
Back to the drawing board!

@tom woodman It's such a frustrating disease state. From what you describe I have to agree that amitrip would not be a good idea for you. I take it at night because it knocks me out usually. For me the combination of better sleep and less pain has been good, but if you are one of those who already sleep more than you'd like that's no help.
It hasn't helped the fog at all. I still have lots of fog, speech problems, word confustion, poor short term memory and all the lovely problems with sight, light and sound that go with this wonderful experience.
I am not sure there is a drug out there for all of this until or unless Ampligen or Rituxen show results.
I think you are right that POTS contributes a lot to the fog.
All I can say is, I wish you luck in your search for an answer.
KBO

too right Shell we have frustration coming at as from all angles, the condition, docs, everyone else's misunderstanding! And yes drug wise all I got to chase are ADs to hopefully be the life buoy until something that treats the underlying cause rescues me for good! If I find a useful answer en route I'll let you know. Tom

Hi Ema, such a long time since my thyroid was tested so not sure though I don't seem to fit a clinical picture of hypo or hyperthyroidism. I understand you're a steroids guru. My doc has suggested I try two steroid regimes. One of low dose 2mg Pred a day for a month. And then if no response 25mg Pred once a week for a month. I've started on the 2mg dosing, initially a slight improvement in fog an energy but now day 4 nothing. If low dose is going to help do you think I would notice it daily or only after a few weeks? If immediately do you think its too low of a dose? Thanks for your input!

I dont really understanding of 25mg of pred once a week for a month would help?? U probably wont get any effect from it after the second day so theres 5 days a week of feeling like crap. Low dose hydrocortisone is what some try. Isocort is a herbal equivilant of hydrocortisone and is suppose to be equal to 2.5mg of hydrocort. Somewhere to start from would be 2 isocort 3 times a day and adjust from there. Also suggest to look into dhea and pregnenolone but start low and go slow.

The Wellbutrin I am on is still messing up my sleep big time despite me trying last night for the first time 3mg's of sublingual melatonin<I've taken far less than this before>. Took the 3mg's at bedtime and it seemed to have the exact opposite effect on me that I expected. I layed in bed for 2 hours never getting to sleep so I decided to take another 3mg's <I know..probably wayyyy overkill> and I still layed in bed for awhile before I finally fell asleep, but still only got around 3 hours of sleep last night which that has been about the average amount of sleep I've gotten per night for over a week now. Prior to me trying this melatonin, I have not had too many problems "falling" asleep...it's just been more of waking up way too early. Now, the melatonin kept me from falling asleep which surprised me that it would have that effect. Anyone know what's up with this? This morning I've actually read online that other people taking melatonin has either made some other peoples depression worse or made people depressed who weren't depressed. I don't think melatonin is the way to go for me and certainly do not want to mess with too high doses of it. I need to try something else. For now, I'm cutting back my Wellbutrin dose to 225mg's to see what that does. Hate to cut it back,but right now I need to be more concerned with getting more sleep. I've never been one to quickly resort to more heavy hitter drugs and still don't want to do that to help me sleep. I'll try Benadryl, was thinking about doing that at first but didn't, tried something else which obviously did not work.