Well it all started with an extra hot day and my mom in saying 'hi' to me from behind in a restaurant in tappin right on the spot where no skull protects the brain, just skin.
I had a big seizure that same evening and after that, the headache history started.
It will be extra long, and I am not sure if you can read it all.
short version is, I tried to cover all causes of this kind of headache and all disciplines told me, it must be something else.
I first tried all the home remedies, drinking caffeine containing drinks, lemon, get more hydrated (I am good about it already but thought it can not hurt to try getting more fluids still), proper sleep, then Ibuprofen (up to 3x 400 mg and usually two of them cut it with 'normal headaches' I get sometimes) and after 14 days I gave in and saw my neurosurgeon about it, asking him, if the scar tissue in the brain might cause something like that.
He told me to up the Ibu and add Novalgin and said "in this weather everyone has a headache, even I do" and sent me home.
After another 12 days of no relief I went to my GP about it who sent me to the neuro, since he was not there (vacations), I had to go to his colleague in the same center.
This one told me, "ah well, you can take even more of the same meds and it should get better. If not I want to see you in a week"
The seizures got more frequent, so he also had me up the two anti seizure meds.
I tried and went there again, had an EEG and he told me "well it does not look any different from the one you had in March", and he told me to "give it time and go and relax" (how? I am in pain!!)
He ordered an MRI because he thought I was scared about a new hemorrage in my brain. I was not, I just wanted to have a specialist play detective with me and investigate where the pain comes from!
The imaging was of course not showing any hemmorhagic signs, but the radiologist told me, there was some irritation to the meninges (skin around brain), He did not want to say anything about treatment though.
Back to the neuro who did not have any glance at the pictures, just read the letter which stated edema at the scar site.
I have no idea what that means and if it is common one year after brain surgery to still have swelling.
I could not go to the short trip 'to relax' because of the pain, so I just stayed home waiting for the meds to kick in.
I decided to maybe find out if there were other causes to it, so went to an orthopedist, after x ray of the c spine he told me that there were no bony aberrations and it looks like I need PT to relieve tensed up muscles, and if after five weeks of that (once a week) it is not better, I am to return. He does not think it is tension headache though, my description does not fit but to give it a try.
The PT told me the same, but told me also, that she has seen some people after brain surgery, and the small paretic areas do cause great muscle tensions all over the place. She wondered why my neuro did not diagnose any of them and why I am not getting long term prescriptions and OT for it.
Well, my neuro seems to be a bit unconcerned about this, had tests done the week after I had returned from hospital and told me "all is well".
I believed him, he is the neuro after all.
Well, I had my daily limitations, e.g. felt off balance, have sensory problems that never went away, have a (suspected by me but never sincerely looked into) hemineglect in my eyes which caused many almost accidents and he says "all is well, give yourself time to overcome it, you have to willingly look more consciously to the weaker side"
Back to the headache history:
Then I had a prescheduled appointment with my regular neuro ahead, so I thought I will wait for that and talk to him about the ongoing pain (43 days up to that point of constant never getting any better pains in the head)
He told me "since all trials with pain medications failed, you have to take an antidepressant now, it will help with the tensed muscles and by the way, it will need a week or two to kick in, so give it some time, yes?"
To my question if he has an answer to how I am to get over the time till then, because (I broke out in tears) I cant endure any longer, I am in pain for so long already, he just ignored this question.
I thought, well if he thinks,it is the way to go, I will go get it,
start taking it and see a second doc and talk about the course and see what ideas there are besides another 10 to 14 days of ongoing pain.
So I went and got it, and then in the info I read, that it is also used to raise appetite in anorectics, and it is no side effect which may happen occasionally, it is in more than one of ten users.
Hello!!
He knows how I struggle over years already to get rid of those 40 pounds I gained on Fluoxetine, and the mistreatment of Hashimoto thyreoiditis already.
I have to lose the weight to not make Hypermobility Syndrome and joint pains worse, and here he tells me, I need exactly that.
I mailed him and asked if there really is no other alternative??, and he tells me, since we tried all pain meds there are, you need to go on an AD.
"Take that and all will be well, from taking it a week or two it does not make you gain weight"
There is a pattern here, I need to take it this long already to get an effect started, and then, (probably he thinks) since it is in the system already, I wont care, because it helps so well with the pain??
Fluoxetine did nothing at all helpful to my mood (made me not care, but the emotional problems persisted) and all to the fat cells. Why does he do this to me?
The next day (Weekend) I went to the emergency doc of our region, and she told me "it is too early for AD at that point of time, I think it is irresponsible that you had to suffer through this for so long already, and who is your neuro?" She took notes, and told me there are certain classes of pain meds and that we had dabbled around with class 1 meds for too long already, and she would recommend a class 2 and if it does not get significantly better after a day or two to not be hesitant, and go to the ER and have them do titration of pain meds untill I am pain free and watch over the process and check what might be the cause of it more closely than what was done so far.
She also told me that there are certain types of patients, whose health problems were played down to being caused by their psyche alone and that it happens and is so sad, causing suffering which could be prevented.
I might have waited too short, but she had told me to see a significant change towards lessening of the pain soon, so I did go to the ER.
Well the trip to the ER was just 9 lost hours and a drug screening (all negatve of course) and I guess they thought to have someone with drug seeking behaviour and no pain to be treated any different than try Paracetamol.
The docs there recommended I am to call the pain clinic Monday and get an appointment.
Doing so Monday morning revealed, It will take at least another three weeks before someone sees me there, so I went to my GP, had him fill out the pain clinic questionaire and watched his helpers put it on the fax machine and now I wait for their bunch of papers I am supposed to fill out and sure do hope their evaluation is to see me soon (shortest two weeks after they got my reply).
The class two med helped a little, so I scheduled an appointment with my GP to ask if it was possible to get a slightly stronger dose and he looked it up and gave me a rx for it.
At that same time I told him about my oddyssey to find some relieve from the pain, and how it wrecks my nerves to be treated like I dont know anything about myself. He looked up what the neuro wrote to him.
There I had it black on white, that the neuro suspects tension headache and a rebound of my reactive medium to severe depression.
I sure know the difference between tension headache and others,
been there, done that, thank you!
Am one of the few of this species who does not lie about what I do to
keep as healthy as possible.
How can someone not be down, if he had to endure so many days of pain being present and making you sick to the stomach 24 hours a day?
That is no depression, that is torture having to witness how doctors tell you to wait and wait and see if the problem solves itself.
I wont do them the favour to succumb and end my misery in taking my life and them then saying "See? I knew all the time, she was seriously ill with depression".
Now I take a slightly higher dose for the day and less for the night and I feel like a human again.
I wonder if I should give feedback to neuro how I feel about not being listened to and being lied to or if I should leave it at just that and have him prescribe the anti seizure meds to me and leave all the rest out for him not to know?
He has placed me under "psycho" in his file system anyway, I probably can not change that, so it might just hurt more to confront him with that.
If he reads this blog, he will see how I feel about how he treats me, but
I dont think, he will change on his old days.
If you really have read all the way through, you earn my respect which I give without hesitation.
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