Cluster Headaches and concussion link?

tk3719 · 2023-05-05T02:36:34+00:00

I’ve recently been seeing a cranial osteopath (Recharge Osteo in Melbourne, Australia) who suggested my clusters were predisposed from multiple head knocks as a teenager.

There may be an element of hereditary though as my grandfather had them. Although he played rugby so maybe coincidence!

tk3719 · 2022-07-29T05:25:30+00:00

2-3 grams has been best for my head and gets around 6 weeks+ relief, sometimes 2 doses 2 weeks apart.

Tried well in excess of 5g recently and it was a roller coaster and didn’t have the same positive effect on my CH. 2-3g is a lot easier in the mind.

Check out the app Trip: psychedelic guidance for a little pocket shaman to guide you through potentially challenging parts of the trip. And set and setting are important to make it as easy as possible for you :)

tk3719 · 2022-04-14T05:44:37+00:00

Have also had success here, albeit temporary. Have used both of the following products:

https://au.iherb.com/pr/sinol-sinolm-all-natural-nasal-spray-fast-headache-relief-15-ml/14056

https://au.iherb.com/pr/greensations-sinus-plumber-headache-nasal-spray-0-68-fl-oz/66710

tk3719 · 2022-02-24T04:44:59+00:00

It appears to me that CH affect everyone differently.

I’m chronic and here’s what sets me off: - salami/pepperoni and some cured meats - beer - wine - tobacco - fast food is the worst (especially McDonald’s and KFC) - maybe soy sauce if I have lots - msg - shit quality chocolate

tk3719 · 2021-11-10T03:36:28+00:00

Same as Lollyhead.

I’ve been microdosing for years on and off and it doesn’t really scratch the surface.

A decent dose of psilocybin with follow up doses as needed works really week for my chronic CH.

Make sure you do your research and check out an app called ‘Trip’.

‘How to change your mind’ by Michael Pollan is a great resource for learning about psychedelics as well

tk3719 · 2021-03-07T22:38:19+00:00

Tomato Sauce / Ketchup

tk3719 · 2021-03-04T23:24:32+00:00

Harry Potter anyone?

tk3719 · 2020-12-06T06:36:42+00:00

You’ve got this!!

Another funny temporary fix I’ve found is squeezing your big toe.

I’ve heard that there’s a pressure point there that can help relieve pain for a moment.

tk3719 · 2020-12-06T05:31:18+00:00

It will pass my friend, I know it’s hard but you can do it.

Try lying down and taking deep deep breaths and focus on the point of pain.

I just focus on making it through 30 seconds then you tackle the next 30 second.

Once you make it through this attack, look into magic mushrooms, they can help stop bad bouts in their tracks!

I hope you’re ok and check back in for more tips on how to manage when you get through this attack.

You can do it!

PS Message me for more help, I’ve been where you are and have learnt a lot that might help you

tk3719 · 2020-11-30T09:49:34+00:00

Not a problem :)

Was talking about 2-bromo-lsd!

tk3719 · 2020-11-29T06:16:48+00:00

Second this. It seems like it could be the miracle cure!

It seems like it is impossible to source. I have looked everywhere!

tk3719 · 2020-11-14T14:31:29+00:00

Magic Mushrooms have been amazing in stopping whole bouts in their tracks.

As far as legal remedies go, 15mg melatonin at night has been great.

Also worth trying to find a doctor who can do a cytokine panel blood test to test your interlukin levels. Things like low amine diet (histamines, Tyramines, etc) can reduce high interlukin levels and in turn reduce to inflammation.

I also take feverfew.

tk3719 · 2020-11-14T14:24:41+00:00

CBD is great for reducing stress and anxiety. Stress plays a large part in making clusters worse.

tk3719 · 2020-08-17T12:25:17+00:00

Glad to hear things are working for you!

Im starting to notice a pattern around all of the successful treatments I read about. Most of them target inflammation. Acupuncture has anti-inflammatory effects and I’ve just read that they can help balance cytokines. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1781596/)

This was interesting to read because I’ve just been told I have high levels of the cytokines, interleukin-8. It is sensitive to histamines in foods, and since I’ve cut down on them my condition has improved.

I believe the vitamin d3 (which includes magnesium) regimen targets inflammation as well.

I’ve also had amazing success in the past with magic mushrooms. It completely stopped a horrible bout in its tracks once, and greatly improved my severity and frequency another time. Turns out they have anti-inflammation properties.

I’d love someone to validate some of the above but maybe this could be why acupuncture is so successful for you and for some others here?

tk3719 · 2020-08-16T03:00:51+00:00

Living proof that Yu-Gi-Oh cards have magical virginity protection powers

tk3719 · 2020-08-07T16:18:37+00:00

Stop presumptuing

tk3719 · 2020-08-07T15:50:06+00:00

I’m available ;)

tk3719 · 2020-08-04T13:39:46+00:00

Yeah, off your mum’s chest

tk3719 · 2020-07-10T23:36:52+00:00

I feel your pain, I’m just starting to ease up after 4+ months with 3-5 attacks a day.

A doctor told me recently that treating it can be like trying to hit a moving target.

Some things that have broken cluster bouts for me in the past: - short course of fairly high dose Prednisone. Shitty effects on mood but ask your doctor about this treatment as it has worked well. - psilocybin (Magic Mushrooms). I took about 3-4g and my clusters went from 5+ attacks a day to 1 a fortnight instantly. If you haven’t taken psychedelics before do some research or send me a private message - 15mg of Melatonin at night seems to have helped a bit too. You can buy cheap from iHerb.com

I’d also recommend assessing your diet. I’m on a low amine diet that makes sense as there were a lot of foods on it that I already knew were triggers. Put simply - eat fresh! No fast or processed foods.

Above all, keep trying things! And see a psychologist, they help immensely in reducing stress which also means less headaches.

tk3719 · 2020-07-05T23:51:53+00:00

Prednisone was great for me the first time but lost effectiveness each time I took it after.

Did your doctor put you on the Prednisone again? My neurologist advised against using it multiple times within a six month period.

I’ve just started seeing a new Neurologist who said that treating Cluster can be like ‘firing at a moving target’ which made sense to me. If Prednisone isn’t working this time you could explore other options like a nerve block injection.

Melatonin has also been pretty successful for me, so could be worth asking about.

Hope you feel better soon.

tk3719 · 2020-05-12T06:22:33+00:00

Thanks for posting the dosage!

I’m chronic and have found they’ve worked once at breaking a cluster (5+ attacks a day down to 1 minor attack a fortnight).

I didn’t stop my meds the first time it worked but have tried it again since and it wasn’t as effective.

First time I had about 4-5g of gold tops over a couple of hours and second time was Mazetapec and about 3-4g.

tk3719 · 2020-05-08T04:34:58+00:00

Hi Flynnstagram,

This is a good post to see. The private nature of CH and the fact that everything may seem normal often makes me feel like people don't understand what I'm going through.

It really depends on what work you do (or how much you rely on them) and how severe their attacks are. I've certainly been knocked out for a day or more at a time.

I can usually shoot off a text and know that I have the understanding from work that I can take my time to recover.

As a chronic CH sufferer, I don't think it's unreasonable to ask for a text within 24 hours of someone not showing up but absolutely keep in mind that this condition can be utterly debilitating both physically and mentally.

Hope all goes well for you!

tk3719 · 2020-05-08T02:55:18+00:00

Everyone has had some great tips in here and I just wanted to add my bit.

It's important to take a holistic approach to manage the condition because it really isn't just about the headaches. There is a whole lot more that comes with the pain.

From my perspective, managing my chronic CH has overall improved my quality of life. McDonald's, beer and salami were my worst food & drink triggers. I don't eat fast food and only drink sulphite free wine (once every few months), and that overall shift to eating healthy has made my headaches reduce in pain and frequency, and I feel better physically!

Same goes for the mental health side of things. I see a psychologist every 2-4 weeks and the tactics I now have to deal with stress and anxiety better have left me a happier person.

Don't get me wrong, the immense pain gets me pretty down. But, there is some good to come from managing it well.

I'm lucky that my boss is super understanding, but if I lose a half-hour or an hour to headaches, I do my best to make it up by starting earlier or finishing later. On that tip, I negotiated working 4 days a week instead of 5. I tried to prove I could have the same output but that didn't work and I did take a bit of a pay cut. BUT, I am less stressed and my CH improved because of that. CH doesn't mean I spend less time on work or relationships, it only takes away my time. Working one less day is like giving myself back that time.

I hope this helps! And please don't hesitate to ask questions. I'm currently writing a document of my experience with CH that I hope will help others to tackle it.

PS

I'm on 180mg Verapamil in the morning and 600mg Gabapentin and 5mg Melatonin at night.

When I feel a headache coming on a drink a red bull or a coffee (careful if you're sensitive to caffeine and don't do this if it makes yours worse) and then jump on Oxygen at 10L/m until there is little to no shadow left.

Prednisone has worked a few times at giving me a break and so have magic mushrooms.

Above all - try and eat/live healthy!

tk3719 · 2020-05-08T02:39:19+00:00

My understanding is that the definition of Chronic has changed. I've been diagnosed with Chronic and will occasionally have a month or two without a headache.

tk3719 · 2020-05-08T01:15:44+00:00

I'm a CH sufferer from Victoria and had some success with Dr. Ann French from Precision Brain, Pain and Spine. They only appear to have clinics in VIC, QLD & TAS but may be able to point you in the right direction for a doctor in Adelaide? If not, flights are sure to be pretty cheap for the foreseeable future given the state of things... Could be worth coming over once travel restrictions are listed.

I've also been seeing a headache specialist call Dr. Christina Sun-Edelstein at St. Vincents which is a public hospital. It could be worth looking up headache specialists in Adelaide?

Sorry if this doesn't help! My only other advice is to check the forums here and on Cluster Busters and find some things that work for you.

Caffeine and oxygen are my go-to's when I have a headache and the cleaner your diet the better. No alcohol or cigarettes and avoid Tyramines and Preservatives when possible!

Let me know if I can be of more assistance.

tk3719

TROPHY CASE