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Trying to find the source of my permanent headache

Posted , 3 users are following.

n53561
n53561

I'm going to try to explain this as best as I can without having to go through my entire history of symptoms which is long. I feel that some details cannot be omitted though in order to explain the nature of my headache so please bear with me.

I have had fibromyalgia since my late teens (confirmed by a recent blood test) which first came as fatigue, cognitive dysfunction and nerve symptoms, then at 19 the muscle aches and sleep issues started to develop and the a permanent headache ensued in addition to all the classic fibromyalgia symptoms that afflict the nose, eyes, mouth, throat, bowels etc. You can say that the onset of symptoms and their intensities were gradual. I also have degenerative disc generation diagnosed at the age of 23 which seemed to come about gradually as well. The doctor's theory was that it was developing for quite a few years. I have TMJ, my jaw pops on the right when I open my mouth and it's painful at time. I'm 36 now and I've been practically disabled since my mid 20s which has made me resort to selling merchandise online as a means of living. Apart from the fatigue, I'd say my most debilitating symptom is my headache. It is very intense, never goes away, only eases once in a while and not enough to take me out of my misery. I haven't been able to get a hold of what intensifies or alleviates it and documenting my everyday life has not helped in catching a positive pattern. It just seems to be out of whack.

Here's the best I can explain it. The pain seems to emanate from nerves in the back of my head towards the sides of head and on to the temples. There are several very painful trigger spots including temples, next to the eyebrows, upper sides of the head by the middle, where the ear meets the jaw and the muscles at the back of my skull. Let me also add that I have a lot of pain behind my eyes which fluctuates, very sore eyes and since 2013 I've developed permanent and mysterious blepharospasm (literally permanent eyelid twitching during my waking hours) which I'm supposed to get Botox shots for. It feels like a pressure headache and my ears pop at times, they also frequently pop when I move my eyes. I've been trying to find out the source of the headache while trying to treat the underlying symptoms of fibromyalgia but I haven't had any lasting success. Here's what I know it's not

Migraine headache: does not fit the description and duration

Cluster headache: it's on both sides proportionally

Stress: My life without my chronic condition would be nice and dandy

To the doctors that have been treating me, a few of my symptoms seemed very unusual and atypical of fibromyalgia so I'm opening my mind to the notion that I might have other complications. The closest literature I've found that describes my issue is occipital headaches but I'm really uncertain that this is it. I was diagnosed with pinched nerves in my back along with the DDD so I was wondering if there's a correlation. Could any issues in the back of the skull cause a permanent headache the way I described it? If any one has any plausible theories, please share. This has been an issue for over 10 years and has made me very desperate and miserable. Thank you.

 

0 likes, 6 replies

6 Replies

  • wendy80842
    wendy80842 n53561

    Posted

    I'm sorry that you're dealing with so very many health problems all at once, I really do feel for you. My intermittent, but horrendous headaches are bad enough, as they're on top of MS, neurological conditions are both a literal and metaphorical pain in the @£$€,I'm sure you'll agree. When I read through your post, I didn't notice any mention of hydrocephalus, I only mention this as I have it (apparently mine is classed as 'low level', it sure as hell doesn't feel it). I had cerebrovascular surgery when an aneurysm, I hadn't been aware of, ruptured and after trying simpler solutions, and them failing, they had to operate. The headaches are a common aftereffect (hydrocephalus). The way you describe your pain strikes a chord. I don't suppose this will be what ails you, but, perhaps it's something else to cross off, if you haven't already.

    Take care, x

  • n53561
    n53561

    Posted

    Hey Wendy,

    Thank you very much for your reply. I really appreciate your perspective on this and my thoughts go out to you as well. It is certainly a comfort to be corresponding with someone who suffers from similar ailments and can shed some light with their knowledge. I took a quick look at this after learning of the term "hydrocephalus" for the first time. From looking at the wikipedia page states, a lot of symptoms overlap with mine like chronic headaches, loss of coordination, difficulty concentrating. But then again there are a bunch of ailments with symptoms that overlap with those. It doesn't quite reflect my situation because I don't always feel sleepy, in fact my issue with sleep is insomnia despite the fatigue. I do experience occasional vision issues from the fibromyalgia but this has eased with supplementation and has become a lot less frequent. I do have irritable bladder and difficulty urinating on occasion (also improved with supplementation), but I would assume this would be a lot more frequent with this condition. Yes I have poor memory during flares (it comes with the territory) but there are those times when I'm more sharp with the easing of my symptoms. I also don't see any details regarding the nature of the pain, eye pain etc. which makes it questionable as a diagnosis. On the other hand, I've been contemplating on having a spinal tap sometime to see if it would unveil anything, especially that I sometimes do find limited relief in standing upside down for a while. Also, having this for more than 10 years, shouldn't my symptoms progress into something more serious like an aneurysm in your case? Can you please describe a little bit of what you experienced as symptoms of this hydrocephalus? Many thanks.

     

    • wendy80842
      wendy80842 n53561

      Posted

      Hi again, yes, absolutely: when it (hydrocephalus) begins to build up, my first sign is usually finding it increasingly difficult to walk in a straight line (I say walk, it's more of a dodder, at 12years beyond diagnosis), I fall about all over the place. Next, the pressure pain starts to build, it becomes increasingly hard to think straight, it's difficult to string a sentence together. When it's at its worst, I become very light sensitive, anything but low lighting makes my head pain go through the roof. I often just zonk out, waking (if I'm lucky) hours later. It's bad enough for me, having headaches about a third of the time, I can't imagine what it's like for you. One peculiar thing that sometimes eases it a little, is, in a seated position, tipping my upper body forward, until my face is pointing at the floor, then rapidly swivelling my head from side to side. I realise that it sounds like a ridiculous thing to do, I have no idea why I tried it in the first place, but I did, and it sometimes really helps. I can only think that it redistributes the pressure, somehow, which relieves the pain. I use a steroid nasal spray every day, for allergies. Any kind of bug, and it immediately kicks in. I already take various meds, to help me deal with my MS symptoms, one of them is ibuprofen, it's the only one that so much as touches the head pain.

      Are you in the UK (I am)? Only you mentioned insomnia, after midnight, here. I have rampaging bouts of insomnia too. Sucks to be us, huh?

    • n53561
      n53561 wendy80842

      Posted

      I do have problems walking at times and I suppose it has a lot to do with my fibromyalgia incoordination and dizziness, but it's not as severe as yours sounds. I seldom do fall. I'm sensitive to light just like with sound (this is a fibromyalgia symptom) which is why I've been sleeping with an eye mask for years and recently with a white sound machine. What you described with the tip while seated is exactly something that I also do because I can't always be going to bed to lie down, or the inversion table in my garage. What I feel is increased pressure in the nose, eyes, temples, popping sounds in my ears, tops sides of head, and sometimes I do wobble my neck to feel pressure on some spots (my neck always pops when stretched). I guess that's exactly the same thing you mentioned. It just gives me minor temporary relief though and as soon as I'm up it's back to the way it was. I have capsaicin nasal spray which I use at times but it doesn't do much for my headache, it's mostly for my rhinitis. I also have a chronic runny nose and phlegm which also comes with the territory. Ibuprofen or advil never did much to me. I take tramadol and lyrica occasionally and there's barely an effect from these. Thing is I've had the MS test years ago and it came back negative, and the fibromyalgia test came positive. Both deal with immune abnormalities although fibromyalgia has not been detected to be autoimmune. No, I live in California, USA. This is the first headache forum I found on google and I signed up for it. Yes it really sucks to be us. I have to find a solution to this issue because it's unbearable. My body is a pit of hell. Thanks for the consolation Wendy.
  • Hollyberry
    Hollyberry n53561

    Posted

    I don't know if this is significant or not but I had similar headaches to you. 7 doctors failed to diagnose what was a physiological problem with bones in my upper spine/neck. A chiropractor spotted it in seconds and a few treatments in she commented on my clicky jaw ( right hand side, same as you, it's been like that ever since I can remember) Chiro remarked that a large number of people with clicky jaws have or develop neck problems.

    it might just be worth getting an assessment to see if it will help. 

    After treatment ent from the chiropractor I do simple exercises and have started swimming( well I call it swimming, I float around on my back doing "snow angel" type movements, It's helping.

    good luck.

    • n53561
      n53561 Hollyberry

      Posted

      Hi Holly, thanks for your contribution. Thing is I do have degeneration in my back and neck and I've been hypothesizing that the headache might be the result of pinched nerves in the neck, since the headache feels so neurological and seeming to originate from the back of the head. I did see a chiropractor for years and the pain relief was very limited in terms of back pain, nearly nothing for the headache. In my case, the TMJ and osteoarthritis are a degenerative secondary condition to the fibromyalgia. There are times when my jaw feels more flexible and less painful but the headache seems to be a seperate entity. Here's the thing though, I did have an X-ray in the past and the doctor did not spot any abnormality with the bones. I did have a CT scan but, for some reason, the report does not cover the vertebraes above C3/C4 and my disc bulges seem to be on C5/C6 and lower. I do a lot of stretching and exercise in a normal situation and I can't deny that this temporarily takes the pain a notch down, probably due to blood flow. But I know it's no real solution for me and swimming in the summertime has not relieved it by much when I wake up the next day.

      What sort of assessment did you do if I may ask? X-rays or more thorough?

       

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