Headaches .....share

[Nord Wolf]

Mine seems viral related - sinus - ear - lymph .

Have you tried Olive Leaf nasal spray. It isn't a "miracle", but it does help mine.

 

[Emmarose47]

@Mimicry that's such good news ! The relief I can only imagine is nothing short of wonderful x

 

[Emmarose47]

Again? Very sorry to hear that Emma. The old headache threads you and I were on are no longer of help?
Does anything you've used before still help, or has your body gotten too used to them and now rejects them?

Ah thanks Nord .... I'm on 30mg amitriptyline now and that's helping a lot ...
Also wearing a jaw guard sometimes at nite helps the clenching ...
Tiger balm helps too

 

[Mimicry]

@Mimicry that's such good news ! The relief I can only imagine is nothing short of wonderful x

Yes, absolutely! ❤️ Though I'm a bit disappointed in myself because of how quickly I forgot how relieved I was. Now that the headache isn't bothering me 24/7 I can concentrate on other symptoms and be miserable due to something else 😅 I constantly need to remind myself to be grateful for small victories!

 

[Mimicry]

Argh. The headaches came back 😵 GABA only relieved them for a week. I started taking amitriptyline 10 mg four days ago, and it hasn't really taken effect yet. Before this I got a prescription for candesartan and I tried it for a week, but being a blood pressure medicine, it lowered my bp too much and made my lightheadedness and arrhythmias much, much worse (I literally felt like I was dying, but at least it kept the headaches away for a while 😅).

@Emmarose47 did you get any side effects from amitriptyline? So far I've been feeling a bit weird in a way that is difficult to put to words (tingly and wired could be a close approximation), my heart rate is a bit faster than normal, my heartburn is worse and I get nausea when I'm upright. It's not too bad though and I'm hoping it will go away in a couple weeks. If it helps my migraines and nerve pain it's absolutely worth the side effects!

 

[Emmarose47]

@Mimicry hi
Sending best wishes for relief this type of headache is a drain .
Amitriptyline has worked well for me ... I do infrequently have it ( when I've been clenching my jaw a lot ) but ice packs provide good relief and sometimes it goes completely .
I started on 10mg and then west up to 20mg and then 30mg .
I did read somewhere ( of where I can't remember that it can take few wks to reach full effect ...might be worth checking that out with your G.P
Side effects ummm I'm on a high dose of an ssri so already have some sedation and heart beat / adrenalised response .
With the amitriptyline my biggest thing has been sedation for it's calmed down with each increase after wk or 2. Thirst has increased . Dreams are psychedelic but they were before with ssri . Also I've noticed I'm more accepting of being housebound , less distressed.

Might be worth taking it the same time u eat ?

 

[Mimicry]

@Mimicry
I did read somewhere ( of where I can't remember that it can take few wks to reach full effect ...might be worth checking that out with your G.P
Side effects ummm I'm on a high dose of an ssri so already have some sedation and heart beat / adrenalised response .
With the amitriptyline my biggest thing has been sedation for it's calmed down with each increase after wk or 2. Thirst has increased . Dreams are psychedelic but they were before with ssri . Also I've noticed I'm more accepting of being housebound , less distressed.

Might be worth taking it the same time u eat ?

Yup, most meds don't start working immediately so I didn't expect this to do it either. 😁

I don't think the nausea is from taking it with or without food because I take it in the evening and get the nausea next day. Amitriptyline inhibits serotonin reuptake so I guess it could be due to that? Seems like I've been extra sensitive to any extra serotonin in my gut for the last couple years because I also started taking mirtazapine and sertralin last autumn and they caused some nausea with every dose increase for two weeks. After my body got used to mirtazapine it started to have the opposite effect and actually helps my chronic nausea, because it blocks some serotonin receptors in the gut. Amitriptyline is also used to relieve nausea so I'm hoping it will have a similar effect after my body gets accustomed to it. 🤞

Then again it acts on so many different receptors that I guess you can never be sure which one ends up causing problems in the end and what kind of effects it will have. We'll see!

 

[Mimicry]

Update:

Amitriptyline stopped working three weeks ago after I'd been on it for a month or so. A gp put me on nortriptyline, and it seemed to work for less than two weeks and then the headache came back. It also seems to make me super anxious (which triggers my dissociation and CPTSD, good times) and my sleep quality is much worse than usual. I'm guessing the effects are due to the increase in noradrenaline but could also be due to the headache, dunno. I'm gonna try it for three more weeks and then quit if the headache is still there.

I also started taking a herbal supplement that has butterbur and feverfew in it, and I bought more Q10 (both ubiquinone and ubiquinole). Those are supposed to help migraines. I tried ubiquinone for two months last autumn with a small dose (100 mg a day), but from what I've read, a bigger dose or taking it together with ubiquinole might be more useful. I also bought 5-HTP. Since triptans are one of the few things that help the headache and they are serotonin receptor agonists, I thought 5-HTP could work as well.

I also have a doctor's appointment in a couple weeks and I hope they're writing me a referral for a neurologist. I guess it would be a good idea to examine my head and neck thoroughly because the headaches came on so suddenly, but we'll see if the neuro just laughs at me. 😣 I don't trust doctors very much with everything I've gone through.

 

[Emmarose47]

Hi @Mimicry thanks for the update..

I'm with u I've never experienced so many headaches.

I'm still taking the amitriptyline 30mg and I haven't had the terrible left side nerve pain back but doesn't ness mean that's down to meds. I'm reluctant to come off it as added with my other ssri it seems to give me more lift with mood. However as I write this I'm not sure that's true! I've had a horrendous mth with flare and cptsd..

Mine seem stress related... I also clench my teeth a lot in the nite.

I did read somewhere that amitrip can take a good few wks to reach full effect?
Yes more anxiety is something we can bloomin well far do without!

Seems a good idea to have neurological asses ... Id like that but no room for something else at the hospital..

Ice packs and tiger balm do help me however the pressure in my head feels intense often like it needs a hole boaring into it.. But hey M. E does mean pain and inflammation of brain and spinal cord.

I've had head aches since being a kid it's wearing..

 

[Judee]

I do get headaches but not as much as others here. I just wanted to mention that I read recently that B2 can help with migraines in case anyone wanted to research that. There are also a few old B2 threads on PR, one with warnings so you could read those as well for any precautions.

 

[Mimicry]

I do get headaches but not as much as others here. I just wanted to mention that I read recently that B2 can help with migraines in case anyone wanted to research that. There are also a few old B2 threads on PR, one with warnings so you could read those as well for any precautions.

Oh yeah! I tried B2/riboflavine last summer but it did nothing. But it was absolutely worth the try and wasn't too expensive!

(Btw I took the first dose of ubiquinole and ubiquinone today and it seems like my muscles are less achy and the headache is a tiny bit better. 🤔 I don't remember them doing anything when I tried them in the past but then again, my ME is worse than ever so it's possible that there are new issues that the ubiquinole is helping with.)

 

[Emmarose47]

I'm going to try reducing the amitriptyline the sedation is getting on my nerves

 

[Mimicry]

I've managed to get my migraines under control with 5 mg nortriptyline (it's just half a tablet so the side effects aren't too bad) + 5-HTP 100 mg two to three times a day (increases serotonin) + a lot of salt water with liquorice root powder (my muscle ache has been significantly better after I started taking more liquorice and salt). I'm also dabbling in low-carb and gluten free diet, it's only been a couple days and I haven't exactly been religiously avoiding carbs so too early to say what will happen. My morning nausea/tachycardia attacks I usually get after breakfast have stopped though!

 

[Mimicry]

I'm going to try reducing the amitriptyline the sedation is getting on my nerves

Keep us updated on how it goes 🙏

 

[Emmarose47]

Thanks I've dropped 10mg the sedation has lessened so that's good.
I was walking around like a zombie those poor people that have used this as an anti depressants gee...

 

[Emmarose47]

The pain was so bad went back to 30mg ..
Today I'm like I've smoked a lot green stuff..
Gentle day for me

I may try 25mg see what that's like..

Can't really carry on being so sedated

Will make a doc appointment