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Something worked for my headaches.

heapsreal

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10,089
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Special formula worked for my chronic headaches and has lasted well over 24hrs. But don't do as I say, entertainment info only.

I'd taken palexia a couple times during the day and they help but last about 4hrs. Pain was ramping and late afternoon took 2x150 lyrica, tizanadine 2mg and 10mg baclofen, this helped and i wasnt groggy or anything.

About 3hrs hrs before bed time the headache was starting to come back so smashed it with 2 lyrica. I think then I was smashed as I was a funny bugger and my Mrs was laughing at me alot. That can be me just normally too. Bed time I take my sleep meds but no lyrica as enough on board.

Probably 9 or 10pm which is early and I was out like a light slept well but 3am I'm awake I said struth. So got up took a valium and a lyrica and sat in the lounge for half hr playing on my phone, than it started to hit me so I stumbled into bed.

I woke up because my bladder was bursting. I felt smashed, one of my pillows was over the other side of the room and my phone the same. I'm thinking what happened. So I get up for my tinkle, walk out the room and look at the clock down the hall way, oh shit it's 130pm struth. So I tinkle like a racehorse and just went back to bed and lay down just to get my head back to normal.

My wife came home at 3pm from work. She said when she kissed me good bye in the morning I didn't move. I looked like Homer Simpson asleep with my mouth open and drooling. Drooling means stage 4 deep sleep but I think it was stage 7.

After something to eat etc I felt good. I went to take my morning vitamins and my wife automatically said is your headache coming back, No, but normally I would be whinging about them by now.

9pm came and took sleep meds and drifted off to sleep. Currently it's 4am but was awake at 2am. I half expected it after sleeping 15hrs and still no headache yet. But I will try and get a few more hours sleep while it's dark.

Baclofen I normally find doesn't put me to sleep but sleep quality is good and can sleep abit later when I do. Looking back, that was alot of lyrica for me and usually gives me good heache relief but sleep quality is good. The combo of baclofen which was a small dose and lyrica smashed me and must a shut a few neurons up and the shingles nerve along the side of my head that causes many headaches.

That's my experience and I actually feel good.
I've taken similar doses of lyrica and was actually on 300mg twice a day a couple years back for these headaches but I was a zombie.
I think adding the baclofen actually was the think that did something when combine with lyrica.

So my secret formula i have shared I will use on special occassions, like when my head is about to burst and it's one of those 3 day type headaches. Wow, I actually feel good. Maybe it's a cure 🤔🤣🤣🤣🤔😉
 

hapl808

Senior Member
Messages
2,052
I think Baclofen was one of Goldstein's preferred treatments. I've actually been interested in it because I have major muscular problems - severe enough that muscular diseases were often investigated more than CFS (I can't stand up without support).
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Just a thought or bro science but getting 15hrs of deep sleep probably helps alot of neuroinflammation. Normal nsaids don't touch it and Cortisone type steroid seem to ramp up the neurons. Where we need something to calm all those neurons down.

It reminds me abit like after having surgery on my knee a few years back. My head felt great afterwards and lasted a few days.

I just wonder if putting us in an induced coma for a few days would help. I know with head injuries they do this and every few days they wake them up to see if things are improving, if not ko you again abit longer. I know we are different to severe head trauma but there seems to be value for neuroinflammation to calm things down.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I think Baclofen was one of Goldstein's preferred treatments. I've actually been interested in it because I have major muscular problems - severe enough that muscular diseases were often investigated more than CFS (I can't stand up without support).
Yep Goldstein prescribed it abit and also lyricas older brother Gabapentin. It's classed as a muscle relaxer but works good on the brain too.

If your male and suffering weakness like your saying and maybe some muscle wasting, get your hormones checked and especially testosterone because if it low, treating it can help any muscle wasting and help improve strength and recovery. Some drs prescribe a gel or a cream but many find it worthless but find injections much better. A shot once a week or a fortnight could help alot.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
If someone was willing to offer that, I expect they'd have plenty of volunteers from the ME community. Anything that could possibly help, that doesn't have significant health risks, might as well be tried.

Cost would probably be an issue and then they'd say it was dangerous. But if it helps theres a risk to benefit that would be in our favour.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,997
I don't know why but for me folic acid works on the headaches.
I switched to methyl folate for long term use since i take it daily but if i miss one i will notice in a day or two.
 

hapl808

Senior Member
Messages
2,052
If your male and suffering weakness like your saying and maybe some muscle wasting, get your hormones checked and especially testosterone because if it low, treating it can help any muscle wasting and help improve strength and recovery. Some drs prescribe a gel or a cream but many find it worthless but find injections much better. A shot once a week or a fortnight could help alot.

I have slightly high testosterone for my age but had a naturopath still want me to try testosterone for strength. It was absolutely awful - made all my muscle pain significantly worse and unable to stand even with crutches. Went away when I discontinued.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I have slightly high testosterone for my age but had a naturopath still want me to try testosterone for strength. It was absolutely awful - made all my muscle pain significantly worse and unable to stand even with crutches. Went away when I discontinued.
If testosterone is high then pointless using it.
You sound like a hard case to work out. 🤞
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
I just wonder if putting us in an induced coma for a few days would help. I know with head injuries they do this and every few days they wake them up to see if things are improving, if not ko you again abit longer. I know we are different to severe head trauma but there seems to be value for neuroinflammation to calm things down.

I have been wondering this a lot lately.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
I'm not sure about comas, but it sure would be nice to have an 'off' switch. No struggling to fall asleep (and failing), just push a button (with a timer). Having an awful day? Push the button!

Parents might want such buttons for their kids. ;)

Useful for overactive pets too.
 

Marylib

Senior Member
Messages
1,155
Baclofen is great stuff. People look at you like you're crazy when you bring it up. Unless you have MS, then you're good to go. Just something else to have in the tool kit. Glad you had some success with that combo you were using.
 

Husband of

Senior Member
Messages
313
Baclofen is great stuff. People look at you like you're crazy when you bring it up. Unless you have MS, then you're good to go. Just something else to have in the tool kit. Glad you had some success with that combo you were using.
Hi Mary, for what reason did you get prescribed baclofen?? I'm thinking of asking my wife's doctor about it because he has asked me to look into an ssri, to combine with the mirtazapine my wife is taking, to better treat anxiety. Thing is I don't really think she should go on an ssri; she's tried them all in the past and none were really that helpful. So I want to look into other options.

someone else mentioned baclofen working well with mirtazapine for anxiety, but given it's not the normal reason it is used I want to work out how (and obviously whether I should) I could convince the doc to let us try it.

The other thing. Was thinking of trying his cbd
 

Marylib

Senior Member
Messages
1,155
Hi @Husband of
I was wanting baclofen for sleep. At one point I had a very kind naturopathic physician who prescribed a few. I ended up taking a half-dose (can't remember how much exactly) and it gave me a good sleep when I took it now and then. I had to move away from the area that physician was in and have not been able to get it since then. Either the doc has never heard of it or they say they can't get it for me. Probably only an MS doc. I think it works as an antispasmodic for that condition. I wish you good luck!
I may have originally read about baclofen for sleep on this blog. I think she had it listed on one of her charts?
https://nopostergirl.com/2011/05/08/weapons-grade-insomnia/
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Hi @Husband of
I was wanting baclofen for sleep. At one point I had a very kind naturopathic physician who prescribed a few. I ended up taking a half-dose (can't remember how much exactly) and it gave me a good sleep when I took it now and then. I had to move away from the area that physician was in and have not been able to get it since then. Either the doc has never heard of it or they say they can't get it for me. Probably only an MS doc. I think it works as an antispasmodic for that condition. I wish you good luck!
I may have originally read about baclofen for sleep on this blog. I think she had it listed on one of her charts?
https://nopostergirl.com/2011/05/08/weapons-grade-insomnia/
Baclofen is one of those drugs that supposedly can increase stage 4 deep sleep and help growth hormone secretion, so can be helpful with restorative sleep which can help pain.
 

heapsreal

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I was just going to add to this thread as I've changed things since I started this thread.
I'm basically off lyrica as it was putting weight on me especially the last few months as I increased my lyrica dose for the headaches.

I tapered off the lyrica to quickly at first and ended up with a 4 day migraine vomiting spell in hospital and took another week to really get myself together. So I went back up on the lyrica dose abit and tapered of alot slower. At the same time I added topiramate which is used for migraines, hard to say how much its helping headaches or not as still getting headaches. But topiramate has helped me lose alot of weight which I needed to do, so far 25kg/55lb so far, I could do with another 10kg, I'm 6ft1 and big frame, so 100kg is skinny for me but planning for about 110kg. I also think coming off the lyrica has helped wt loss as before on lyrica any attempt to lose wt was impossible. Now on topiramate and I've always eaten low carb the wt has fallen off without trying.

Lyrica is a good drug for pain. And I'd probably recommend it for short term use or very intermittent use. I had a good 3 months off lyrica completely and then had a headache that wasn't budging with other meds, I took 150mg of lyrica and it was like throwing a bucket of water on a camp fire. Relief at last. So I'm probably using lyrica once a week for headaches??

Currently working with a neurologist and getting a work up. So far the diagnosis is migraine with possible neuralgia from shingles and possible intracranial hypertension going by mri and symptoms.

What sucks with headaches is they don't want you taking anything more then ibuprofen and say anything stronger causes rebound headaches or medication overuse syndrome. I think it's most BS, as I went by their recommendations for a few months and felt worse,quality of life diminished. Bugger it I wasn't going to feel like shit all the time. One dr at the hospital said only acute pain is real pain, chronic pain is like a computer malfunction. I'd like to see this Dr when she is older and her chronic back and or hip pain is greatly reducing her quality of life and tell her its not real pain because it's not acute or if she has a migraine, it's not real pain it's just a computer input problem.
I hate most drs 😬
 

Husband of

Senior Member
Messages
313
@Marylib thanks; a pity then that mirtazapine has pretty much fixed my wife's sleep issues. @heapsreal mirtazapine supposedly increases deep sleep too and has been massively beneficial for my wife. I've been waiting to see if it lasts before posting about it, given how often people get temporary improvements from various treatments, but it's been five months now of functioning at least three times as much/well as what she had been. Could also be the antihistamine effect, n addition to better sleep that had helped her, and lower anxiety which had been taking a lot of energy from her. Pots issues are now almost gone
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
@Marylib thanks; a pity then that mirtazapine has pretty much fixed my wife's sleep issues. @heapsreal mirtazapine supposedly increases deep sleep too and has been massively beneficial for my wife. I've been waiting to see if it lasts before posting about it, given how often people get temporary improvements from various treatments, but it's been five months now of functioning at least three times as much/well as what she had been. Could also be the antihistamine effect, n addition to better sleep that had helped her, and lower anxiety which had been taking a lot of energy from her. Pots issues are now almost gone

Sounds like good news if it's helping your wife and several symptoms. We are all different when it comes to how we react to meds. Mirtazapine wasn't for me, it worked the first night but nothing after that. From memory I found it helped if I used it very infrequently like once a week, but that's just me. The only thing I've heard about Mirtazapine to watch out for is it seems to increase weight easily in most but again its very individual.

It's good your wife has found something that helps several symptoms. From memory when I was researching hard on sleep meds, Mirtazapine did have some effects on histamine receptors plus also 5ht2a and 5ht2c receptors that help sleep and anxiety and pots. Good to keep in mind if she ever needs to change meds due to tolerance etc then look for a Med that works more on those specific serotonin receptors. That's great news that one medication can help with several symptoms. 🙏🤞 it keeps helping. Good stuff👍