Misc Hell in My Head

[Conspirator]

I shall start this post by stating my situation... I chronically (every damn day) suffer from some of the most painful migraine headaches imaginable. I've been to too many doctors and the entire conclusion drawn by them was that I have the worst headaches they've ever seen. Now, let me say this, I'm no pussy, I have naturally a high pain tolerance, but have developed an even greater one since I began getting headaches. What I deal with daily in terms of pain level would be what most people would call a 10/10 in terms of pain, but for me I'd call it a 4 or 5. I once had a headache so bad that I could barely feel the pain when I literally snapped my leg in two. I had the bone sticking out of my skin and could barely notice it, other than visually of course...

Now, I've been to lots of different doctors and participated in multiple migraine studies, and been on about any medication imaginable. I've tried blood pressure meds, heart meds, ergotamine, toradol, every triptan in existance, fioricet... all of the former were legally perscribed, but didnt put a dent in the pain, some made it worse. I've also tried many substances ilicitly as well, including pot, LSD, DXM, Mescaline, Cocaine, Ephedrine, none of them worked either. The first bit of relief I ever got was at age 7 when the doctor prescribed 5/500 hydrocodone/APAP... Those barely even dented the pain even at that age. I remember at around age 11 I took 120mg hydrocodone as I was in so much pain I was ready to kill myself... It was finally at that dosage that I found some level of relief, it probably dulled the pain by about 20% which for me was a godsend; ever since then I figured out that my only real option was opioid therapy. Over the course of my life I'd been prescribed just about every opiate imaginable, but the doctors are too up-tight with the drugs to give a dosage that makes a real difference so I run out early nor are the opioids they prescribe fully effective.

Now at age 22 I finally found a substance that I can break the headache with and live as close to a normal life as I can, Fentanyl taken intra-nasally. The way I treat them is when I first get the migraine (mine reach full intensity in about 30 secs and last weeks if I let em) I take a "knockout" dose of fentanyl, enough to dull all pain which for me currently is about 1.7mg. Than, about 30-90 minutes later I take 2/3 the first dose, than 1/5 the first dose and 1/10 if necessary all in 30-90 minute intervals. The aforementioned taper seems to totally prevent a rebound headache and I can manage to go a few precious hours pain and drug free.

For some reason, other opioids are nowhere near as effective at treating my migraines as fentanyl.

Unfortunately this form of treatment has it's drawbacks, mostly physical addiction and tolerance and cost, but I'd trade physical dependance upon a substance over severe pain any day. I've been treating my headaches this way for about a year and a half and it still works. I am also much more productive in life in general, now I make my coworkers look bad as I am so proficient at my job now. I have a life outside of work, pain, and sleep.

I posted this partially for self gratification, but mostly for the fact that I may be able to help someone in a similar position to me. Of course this isn't meant to be taken as advise, but more so for research and pondering and for use as a starting point. This post is meant to be taken more so as a lab report than anything else.

 

[Captain.Heroin]

I am really sorry to hear about the migraines. I wish I had some Helpful advice.

 

[Shadowsblaze]

Soma have worked great for me. Relief after 20 minutes.

They are muscle relaxers and I'm guessing that doing that, they allow the blood to freely flow though the veins and more important the smaller capillary's releasing pressure that could be the cause of the headaches. Again this is only a theory based on my experience. I hope you you find a solution bro, And welcome to the BL site.

 

[littlepenguin]

Sorry to hear about your chronic pain.

I understand your argument about trading your pain for a dependence on a substance, however, I think you may be sliding down a slippery slope with fentanyl. Just my opinion.

Have you tried Botox injections? Lamictal? Effexor XR? Amitriptyline?

Most of the drugs on the market for the purpose of migraine treatment are to prevent migraines before they happen, usually not to relieve the pain that is already there. Kinda chicken-egg-ish I guess.

Wishing you the best of luck!

 

[Conspirator]

Sorry to hear about your chronic pain.

I understand your argument about trading your pain for a dependence on a substance, however, I think you may be sliding down a slippery slope with fentanyl. Just my opinion.

Have you tried Botox injections? Lamictal? Effexor XR? Amitriptyline?

Most of the drugs on the market for the purpose of migraine treatment are to prevent migraines before they happen, usually not to relieve the pain that is already there. Kinda chicken-egg-ish I guess.

Wishing you the best of luck!

I've tried pretty much all of what you mentioned in your post but to no avail. The only thing you mentioned that I haven't tried are Botox injections, but my aunt tried them and they didn't work and my symptoms generally are similar as hers only more severe.

I've been poked and prodded for 2 years at Emory in various studies and they gave me the novel diagnosis of having really bad migraines. Just to give you an idea of how many resources Ive exhausted, I have racked up a total of over 2.2 million dollars in medical bills, thank god for health insurance...

The way that it was explained to me was that the inflamation of the temporal artery pushes on a part of the brain that releases a chemical that causes pain, but the pain causing neurotransmitter causes more inflamation and hence more pain. It's a chicken egg cycle from hell. so if you can stop the pain you stop the chain reaction in the brain. I was told that my brain is a special sort where there is one part (can't remember name) is just a few micrometers out of place of where it should be which causes the untreatable migraines, although they told me that they wouldn't know for sure untill an autopsy... That's outta the question for now.

I've considered the potential slippery slope of potential addiction, but I'm not terribly concerned. I have gone through fentanyl withdrawal before any the pain and anguish associated with that is probably about 10% of what I feel when un medicated. If I ever feel like I wasn't in control I would stop; and I am confident that I would be able to do so if necessary. I do appreciate your concern though.

 

[LilikoiMoon]

My daughter has suffered from cluster migraines for 18 years now, so I can only advise you as to what has helped her.

First, alter your diet, as nitrates in lunch meats and red/yellow dye is a culprit for migraine triggers. Also, lay off any diet soda/artificial sweetners.

Marijuana helped her more than any medication has. And yes, I allowed her to smoke it to relax because if not, she would be in bed 2-3 days in so much pain.

The migraine medications were not good for her because they dropped her blood pressure too low. And pain meds such as hydro or oxycodone would help at low doses but anything over 10mg would raise her BP, and make it worse.

Hope you feel better. Fent seems very heavy just for migraines, but whatever works for ya.

 

[EP158207]

sorry to hear that , it sounds like a nightmare.

Have you tried AEDs such as pregabalin or gabapentin? The latter is prescribed for migraines. As people have said, fent seem a bit too much foe headaches/migraines and you dont want to be dependant or such a strong opiate.

I dont advise people doing this; but have you considered a low dose benzo combined with gabapentin? That might also work.

 

[rhun]

Unfortunately, opioids are usually the magic cure that eventually stops working. My only advice is to continue trying different treatments even though you've found something that is working (for now). Sorry you have to go through this, I suffer from migraines and they're completely debilitating... I can't imagine what you go through.

 

[Lanni]

I urge you to try low to medium doses of psilocybin to try and help. I remember seeing a documentary about a man who had god awful cluster headaches and now he takes a dose once a month and never has any headaches. I even had an ex girlfriend try it because she would experience extremely debilitating migraines a few times a year. She didn't even enjoy psychedelics but i got some zanax and gave it to her when the trip got a bit too much for her and she calmed right down and she didn't have another migraine that whole year! I mean it's worth a try and it's a hell of a lot better than having to be dependent on such a strong opiate. Best of luck though.

Sources:
http://newsciencejournalism.com/01/...uating-the-worst-pain-that-humans-experience/
https://www.erowid.org/plants/mushrooms/mushrooms_medical1.shtml
http://www.thedailybeast.com/articl...er-headaches-find-relief-in-psychedelics.html

 

[kayaker318]

There is a documentary, "Out of My Head", about migraines currently in the works and raising money on Kickstarter. They have already surpassed their goal but looking to get as much as possible for this worthy cause. I am thrilled that migraines are getting this type of exposure and hopefully more money will come in for research.

Check out a trailer here: https://www.kickstarter.com/projects/1123115585/out-of-my-head

 

[Drybone]

My God man. You are twice the man I will ever be.

Anything I might add would be feeble in comparison to what you have been through. God speed in finding something that will give you some peace.

 

[Conspirator]

I urge you to try low to medium doses of psilocybin to try and help. I remember seeing a documentary about a man who had god awful cluster headaches and now he takes a dose once a month and never has any headaches. I even had an ex girlfriend try it because she would experience extremely debilitating migraines a few times a year. She didn't even enjoy psychedelics but i got some zanax and gave it to her when the trip got a bit too much for her and she calmed right down and she didn't have another migraine that whole year! I mean it's worth a try and it's a hell of a lot better than having to be dependent on such a strong opiate. Best of luck though.

Sources:
http://newsciencejournalism.com/01/...uating-the-worst-pain-that-humans-experience/
https://www.erowid.org/plants/mushrooms/mushrooms_medical1.shtml
http://www.thedailybeast.com/articl...er-headaches-find-relief-in-psychedelics.html

I am familiar with psilocybin, and I have tried it, and got no noticeable relief from it. Apparently my migraines are referred to as refractory migraine which basically means a migraine that doesn't respond to treatment that directly or indirectly effects the part of the brain responsible for migraines. Therefore, the only option that has any chance of working is an opioid of some sort, preferably one with a short half life.

The way my migraines were explained to me was: Migraines are caused by an inflamed temporal artery, that artery then pushes on a part of my brain that releases pain neurotransmitters, but those neurotransmitters have a side effect, they cause more arterial inflammation when received, causing more pain than more inflammation... Its a Hellish Chicken Egg cycle. Because of that, the only way to break my headache is to knock out either the pain or the inflammation, and Ive tried everything to get the inflammation down, from IBuprofen to Steroids. When that failed I tried to knock out the pain, without causing a rebound headache. I figured a dosage taper down was the best bet. First I take a knockout dose that completely kills the pain, than I taper the dose down over the course of 3-5 subsequent doses. The taper completely prevents rebounds. I chose fentanyl because it has a very short half life so I can execute this treatment in under 5 hours and be headache free afterward. Fentanyl also seems not to increase cranial pressure near as much as morphine and codeine derivatives do as well. If I were to use a less potent opiate say hydromorphone, with a half life of about 3 hours give or take, it would take 3-5 times as long to complete the treatment than it does with fentanyl not to mention the taper would need to be longer due to a larger effect on cranial pressure. I prefer a treatment that only takes 3-5 hours to one that takes 24+ hours to complete.

One other thing I'd like to add, Daily use of most any opiate for a period of time greater than about 2 weeks will result in some withdrawal symptoms, but with the shorter acting opioids such as fentanyl, Daily use of 2-5 times daily to treat migraines is less likely to cause a physical dependency. I've used fentanyl on a daily basis for 3 weeks when testing my theory using the dosage taper above and had very minor withdrawal symptoms. A little RLS, (gone in 4 days), A little Hot Cold (lasted about 5 hours) and a runny nose. It was no worse than an average cold. It wouldn't have interrupted my daily activities in the slightest.

Thanks to all of you for your advise and support. I appreciate it and would like to hear everybody's thoughts and opinions.