Eye pain - like my eye pressure behind my eyes is going to force them from my skull. To relieve it I want to remove my eyeballs with a T spoon.
Tension - The muscles in the back of my neck pulling on the back of my skull.
Nasal - Similar to being punched in the nose. Radiating up the nose, into my forehead and exploding through to the back of my head. I express it as someone shooting a bolt up my nose and out through the back of my skull.
Whole of head pain - Just intense to the extreme, ready to vomit (but vomiting just makes it worse. If that is possible.) Like āJust kill meā to relieve it.
I am guaranteed to have at least one of these each day, if Iām lucky. On a bad day (often) Iāll get 3 differing on the same day. If I over do it, push myself to complete a task, as I have done today, Iāll get 4-5 all at once. NASTY.
The wife asks if she can do anything to help. My response āYea, chop it off at the neck. Thatāll fix itā. I say this light-heartedly for her, but a reality for me.
Does anybody else have distinct types of headaches/headpain? Both in identifiable location and sensation? The drās keep asking me for a pain rating out of 10. I tell them (when itās BAD, BAD) 15. They donāt seem to accept this, telling me āOhh it canāt be THAT badā. Then they tell me the brain has no pain sensors, so it canāt be the brain. By Christ, it certainly feels like it to me.
I know there are some with brain injuries who are fortunate enough to have very little continuing painā¦ ā¦Jeez, Lucky them. Some have many other ongoing symptoms but little in the way of headaches/headpain.
So what sorts of headaches/headpain do other members here get?
How do you explain it to others?
How do you manage it? ie Painkillers/rest/dark and silent room.
Any other management tools?
Or is it just me? Some medicos like to put it back on me. ie āItās all in your headā¦ā as if I didnāt know that already.
It appears to me you are not getting enough blood to your brain. For me when I am stressed or exhausted my brain does not get the blood its needs and my skull explodes. In 2013 when I finally got a pacemaker my pulse increased from 36 to 60. However, though the doctors knew my pulse was slow, 42 to 50, I had to be down into the thirties to get a pacemaker. It could also be possible your heart is weak and not picking up enough oxygen for your brain. I am just suggesting you may want to do some research on your heart and see if there is enough blood and oxygen to your brain. The heart and blood has a huge affect on brain cells and if the cells starve for nourishment they communicate with pain signals wanting to be fed. They are gaining lots of cell information on how the cells work and there is lots they do not know, and as you know no doctor will never say they do not know.
Your pain appears overwhelming and shocking. The intense mental suffering appears utter torment and even these words cannot touch the depth of your pain. So sorry you have this and thanks for being here.
This all just a suggestion and our own limitations by themselves are overwhelming and violating.
Hi get those same kinds of headaches. My doctors always told me to take advil for them. If that doesnāt work take more. Take as much as it takes to make them tolerable. Great I did that listened to their advice and then found out that because I did that the advil ate at my stomach lining. I already have major stomach and chronic pain problems that I have learned to handle. After the advil fiasco they told me to take tylenol. I did that once again listened and guess what happened I killed my liver because I took so much. For the neck stuff this may sound weird bur have you tried ketamine injections??? This might not be the best option for you but it certainly helped me. Also dry needling this helped a lot with my headaches. I am sorry to hear that you are in so much pain. That I can truly understand. Pain is the worst. Itās hard to push through and yet you have to. You have no other choice. There isnāt anything that anyone else has been able to do for me. Having a great support system is key in helping with dealing with the pain. If I didnāt have mine then I wouldnāt have made it this far. If you have any questions about ketamine injections or ketsmine itself feel free to ask. Best wishes
~Adilyn
As I also have an irregular heartbeat this is something that has been looked into extensively as a causative of the headaches and dismissed as Iām taking medication to correct the heartbeat issue.
My pain can be overwhelming to say the least. I am very aware of the follow on effects mentally and although I try to manage this appropriately, to say there is no effect would be wrong. Again I think I try to manage this the best way I can. But some days, like yesterday, it got the better of me a bit.
Hey Adilyn,
Iāve had the medicoās give me tablets and potions of every description, some of them are simply nasty, both in effect and side effect. I am cautious to say the least and I investigate every medication prior to use. Many moons ago I ālikedā my drugs too much and I know what happens for me. I know for me it can be nasty, so I try to avoid such substances. Ketamine is one such drug, I simply like it too much, if that makes sense.
I have tried dry needling/acupuncture but with little to no assistance. I was advised that it could take a few treatments to receive any benefit, so I persevered. But when the treating practitioner acknowledge the benefit to be minimal it was agreed to cease treatment. Iāve also tried a TENS machine with little benefit.
Trying to express intense, unrelenting pain to someone who has never experienced it is like explaining a āgodā to an atheist. All you get is an expression of disbelief ie 'ā¦ohh it canāt be that badā¦" So I just say āI have a headacheā, some will enquire for more info but when I say āI want to dig my eyes out with a Tspoonā¦ā I get that same look of disbelief. Now, I, nonchalantly say āā¦Itās all shit, itās just the depth that variesā¦ā and laugh outwardly whilst internally Iām screaming. This helps remove those sympathetic looks, replacing them with more of an empathetic understanding. Like " that bad? huh?" OHH YEA, THAT BAD AND SOME.
Merl, when I get these bad headaches, I get dizzy and nauseas. A lot of the time my head will hurt at my brain surgery sites. I have 2. Other times it is my whole head and feels like it is in a vice. The best thing for me to do is lay down in dark room and try to have everything quiet.
Up to the past year, I had taken a plethora of different migraine meds, also promethazine. the promethazine just knocks me out, then when it and whatever migraine pill wear off, Iād need more.
However, last year I heard about this physical therapist.
I went to see the therapist about my back pain. He has a hand held massager he used on my back, then my shoulders and neck. This man is unlike any other medical professional I have ever met and believe me, I have met a bunch. Probably not many as you though, Merl. He doesnāt like drs either, lol. So, I notice after a few times of seeing him, my headaches are greatly reduced. Back pain was gone. I told him about my brain stuff, asked him how have you done this with the headaches. He says its to do with release of fascia, talks about release of toxins in the body. It sounds like hocus pocus, but it works for me. No pills, just this massager thing and his hands. He does put his hands on my head sometimes, and squeezes. He knows where all my screws are I guess, lol.
As I said, I know its crazy. I am not needing to refill my migraine pills or promethazine near as often. I still get headaches, but they donāt last near as long and Iām not getting them near as often.
Insurance paid for about 20 visits, I think. Now, they are not paying, but I am not hurting either. I will go back to him for monthly maintenance which ins doesnāt cover. Its worth it.
Iām a little bit hesitant to share this, as I know it sounds a little nuts, but this man has changed my life.
Hey Aly,
Interesting you mention pain where your surgical sites are as, predominately, my most common headache is also near my most recent procedure site. I say āmost recentā as Iāve now had 6 surgeries all over my skull, but mostly on the right side. If I have pain start on the left side I can be pretty much assured that it will be progressive and involve my whole head. I find the progressive the worst types personally, be that left or right sided. Usually I can manage a normal (if you can call it ānormalā) right sided headache. My right eye closes up and I look like shit (Or so Iām told) but I donāt get that āIām gonna throw upā sensation.
I had a non conventional chiropractor who was very good, but he retired. His view of some Drās was very similar to mine. They maybe great at writing prescriptions but if it aināt in their textbooks, they have very little clue. HINT: Iām not in their textbooks.
And no, what you say is not crazy. This man was a chiro but he also had some naturopathic skills which I did obtain some relief with. Heās was a longtime friend of my former boss and saw me for years, free of charge, which was a massive blessing. Although, as I say he has retired I still use some of his techniques today, some 10-15yrs on. Jeez, Iād do anything for relief. If someone said standing in the corner on one leg singing āKumbayaā would help, Iād give it a try.
Non conventional. I think those are the magic words. If my pt ever retires or moves on, I will look for a non conventional dr of any sort, I guess.
I wonder if cbd oil would help when any at all, to apply that where your head is hurting?
I just feel like a lot of the drs are trying to fix us in a matter of a 15 minute(if we are lucky) office visit. The scar tissue we have took way longer than any 15 minutes to get.
Hey Aly,
Here in Australia, The Australian govt has been playing politics in regard to the matter of CBD oil. Like the U.S. we have a Federal Govt and state govt. The Federal govt made a press statement announcing the reduction of the cannabis laws for medical purposes. But the legislation they have put in place makes it so difficult to obtain ālegallyā that it is near impossible. They then made it a state responsibility, so now, no state is allowed to grow it due to federal law and the federal govt wonāt allow importation. There is also a list of ailments which it has official approval for canna as a medication BUT brain injuries are NOT included. The individual BIG pharmas want an exclusive right to cannabis, be that CBD or THC or any of the myriad of other cannabinoids. But they canāt patent a plant, itās natural, so now they are trying to patent the processes they use to separate the individual components. The problem is that for many with brain injuries the cannabinoids in whole plant cannabis interact with each other to give the benefit, so not just solely the CBD or THC. But again whole plant therapies using canna is illegal.
Itās all politics and the meaning of politicsā¦ ā¦Poli comes from greek and means manyā¦ ā¦and Tics are blood sucking insects.
As for the drās, pppffftttā¦ohhh Iāve given up on the drās. Iāve seen every sort of dr/specialist/genius and wizard and Iāve given up on them ever having the answers. The dr refers to whatever the specialist says. The specialist says āTheyāve operated, theyāve fixedā¦ā But this aināt fixed. So they say āItās all psychologicalā It seems I must want this pain. Like who on earth would want this, not me thatās for sure. But then, Iām just the patient (who has no patience), these drās have done years of study and they know. Me, I simply just wouldnāt know. I know pain, I know agony, but that doesnāt count. I now know frustration thanks to the medical fraternity. So now I avoid drās, where possible.
I donāt mean to be so negative about it all, but the reality is that it is all negative. The problem is that for the mainstream people the impact is minimal, be that cannabis or the drās. BUT for those of us that it does affect the impact is MASSIVE but there is not enough of us to make enough noise for society to actually sit up and listen. So we are going around and round in ever decreasing circles.
I have my headaches under control nowā¦Do to my injury there are many drugs I am not allowed to haveā¦I used pharmaceuticals for a good 7 to 8 years.
I have my MM cardā¦I vape a high CBD strain called AC/DC and I mix in a strain (THC) of Durban Poisonā¦
The CBD helps inflammation, pain, and is an anti inflammatoryā¦The Durbin is like the pain killer for the headacheā¦It is far to strong straight so I mix in 30% to the CBDā¦Been treating my headaches this way for over 3 yearsā¦
Merl,
I had to laugh at your definition of politics. Dear God, youāve got something there! If only I could remember that for future referenceā¦
Its all about the money when it comes to cannabis and the gov and big pharma I think, heck, I bet a bunch of big pharma ppl and gov ppl are connected. Its hideous. If there is anything at all that could help people like you, like Chill and others who are suffering so badly and cannot find relief, you should all be allowed to try it.
The promethazine knocks me out when I am so sick and dizzy. I cannot imagine what I would do if nothing worked for me. I donāt really call it working for me, like I said it just knocks me out, but at least that, lol.
Its way easier for the drs to tell you its psychological than to admit they donāt know whatās wrong with you, or that some of their cronies have screwed you up. Or maybe to spend hours or days researching your medical history and perhaps looking at other neurosurgeons in other countries who might have something to offer them as far as knowledge goes.
I know you are being real, its not that you are a negative person. Everyone should be mad about this.
We have people in the states moving to Colorado and the other few states its legal, for health reasons. Several have moved because they have children with uncontrollable seizures and some form of cannabis helps where no other pharma drug helped the child improve at all.
Poli ticsā¦
Hey Aly, That definition is comical but, sadly, it is also true. And you are correct, itās all about the sacred $$$ and to hell with the people. Here promethazine is sold under another name, Phenergan. Presently the police here use a drug test for canna for drivers BUT Phenergan causes false positives which is not good.
As for the drās, I, at one point questioned the surgeon. He did not like that. He accused me of trying to obtain information on which to sue him. I wasnāt looking for money. I wanted answers. But when I said I wasnāt after his money it seemed I must be crazy, everybody wants money. So in technical terms Iām screwed if I do, Iām screwed if I donāt. I give up, itās easier. And Iām sure thatās what the medicos are aiming for. Me, to just shut up and go away.
Brain pain, inhumane level. Iām so thankful that I am not presently getting these inhumane level of pain āheadaches.ā It was quite literally torture for me. They would strike me out of commission so severely that I couldnāt move, couldnāt think, couldnāt breathe right, and they kept up for several years.
I can relate to what you are saying. I donāt think there are any words adequate to describe pain once it passes the inhumane level. People just cannot understand it. Calling it a āheadacheā almost seems like it trivializes it, because most people think a headache is something that can be fixed with aspirin, or that one can still function. Thatās why I just call it āBrain Pain.ā Itās so deep, so severe, so extreme, and it is not something Iād ever allow a pet of mine to have to endure. I donāt know how Iām even still alive, because the pain was just beyond the limits of what any reasonable person could be expected to endure.
Iām so grateful for my cat(s). I may have not made it, but knowing they needed me prevented me from permanently ending the pain. Now I do understand much moreā¦ that there is some pain that medicine cannot do much to reach, and that can be beyond what a human being can endure. I met a woman yesterday who is considering hiring me to do home health care for her, and she is terribly maimed from a previous suicide attempt. Her issues were with both pain and depression; I cannot judge. I wonder why no doctor ever told me that there were types of pain for which pain medication cannot do much? Not even Morphine did much to help. Iām just so glad that Iām still alive. I so fear that pain returning, and just try very hard to do good self-care. Itās kinda ironic, though because I feel that there is so much hate/misunderstanding out there against me/ people with ādifferencesā and yet I have to try to love myself anyway and take good care so I can avoid even worse levels of pain.
In a strange way, Iām glad that my family members cannot understand the pain, because that means theyāve never had to suffer it. Iāve listened to my sister carrying on about Menopause symptoms, and while outwardly I showed sympathy, internally I was thinking: āOMG if you only knew how bad pain can really get, Sis, youād NEVER complain about what youāve got.ā Sure she was very uncomfortable, but she wasnāt suffering torturous, cruel levels of pain. Of course I said nothing, because what mattered to her was how she did feel, and Iām only too glad that she hasnāt had to suffer worse.
Anna,
You have become very understanding, as I believe I have. I too have thought āJeez if I kept an animal in this state of pain Iād be charged with a crimeā. Having spent many years working with people with disabilities I know there are people out there in way worse situations than my own and they have been in those situations a lot longer than I too. I believe this has given me āsomeā ability to look past my pain and think āWell, It could be worseā¦ā I know it because Iāve seen it with clients who have lost entire abilities. This gives me some grounding, otherwise I can (and have at times) flown away into a blame mindset.
I still have those ā10+ā pain level days, but not everyday, luckily. Some days Iād simply love to hand those disbelieving critics a ā10+ā day. But if theyāve never been here, they will never know. Lucky them.
Drās have told me if/when the 15+ return I should go and see them.
You can bet that I will.
Merl,
I just noticed this post and I wanted to ask you how you have handled your heart issues with your brain injury? I have two heart problems one is supraventricular tachycardia and the other is Postural orthostatic tachycardia syndrome. These are miserable in their own however Iām having problems managing all of my symptoms together. I donāt know if you have this problem but with POTS one of the things it causes is fainting. Iām having problems with my heart and my brain and I was just curious how you have handled you heart on top of handling you brain injury.
~ adilyn
Adilyn,
Iām taking medication for my heart condition. As Iāve stated previously Iāve seen more drās than I can count on my fingers and toes and each has had their own opinions, discrediting any other opinions. Like āI am right and they are wrongā¦ā Some have said that my headaches are caused by my continuing heart condition, others have said my heart condition is a result of my TBI. Grrrrrrr. I havenāt been given a definitive answer.
With medication, I manage both separately. I do not find my arrhythmia affecting my headaches simultaneously, so IMO, they are two separate conditions. My headache meds do not alter my heartbeat and nor do my heart meds alter my headaches. Again, the drās debate this but as Iām the one managing it all, their opinions count for very little. Donāt get me wrong here, if I notice any major change I do go and see the drās (and recommend others do the same) but if I can manage without going and seeing even more drās I find it better off for me. Often their conflicting opinions can be very confusing.
Merl