Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Permanent headache solution?

Discussion in 'Neurological/Neuro-sensory' started by Lucy1996, Feb 1, 2017.

  1. Lucy1996

    Lucy1996

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    Had CFS since June 2015 following shingles and glandular fever.

    is a permanent headache for 18 months at the back of my head, and throughout the day going to the top of my head and the sides of my head but always going back to the back of my head, normal in CFS? This is also accompanied by head pressure/brain fog (it used to be mushy but now it just feels like extreme pressure).

    I don't know any remedies for this - general headache medication doesn't touch it and I wonder if it's because it's being caused by an ongoing viral infection. This is my worst symptom and i don't know how I can go about treating it? Would anti virals help?

    Any suggestions?
     
  2. xrayspex

    xrayspex Senior Member

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    is there a headache specific clinic at a university that could be any good? there is a thing called Intracranial hypertension that I think I get sometimes where pressure in my head for whatever reason gets worse with lying down. that's a dilemma since I like to lie down a lot (surprise I know ) I think in my case it could be combination of several things such as cervical stenosis in my neck , arthritis, and myalgic encephalitis inflammation.
     
  3. Lucy1996

    Lucy1996

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    Thanks for your suggestion - i am going to look into that. Do you have that almost everyday? Mine never goes away, it just subsides a little throughout the day then gets worse again :(

    Also does anyone know about whether brain inflammation from CFS/ME would show up on an MRI scan? As next week I'm going for on my head finally after eighteen months of this lol.
     
  4. Valentijn

    Valentijn Activity Level: 3

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    3g per day of fish oil keeps my headache away. It takes about 24 hours for it to start working for me. Definitely good to get it checked out though.
     
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  5. Lucy1996

    Lucy1996

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    I am going to try this. Thank you :)

    If you don't mind me asking, what was your headache like? Did it also include brain fog? Mine specifically starts at the back of my head but now (although it never used to) radiates to the front and sides. I just want to see if mine is anything like yours in the logic that what works for you may work for me haha.
     
  6. xrayspex

    xrayspex Senior Member

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    in my case no its not every day and I am sorry to hear yours is, that sounds like quite a trial. I do have periods where it can be everyday--when i first had CFS and neck injury I had it almost daily and actually an atlas orthogonist type chiropractor helped get rid of it, Dr Paul Cheney a CFS expert told me in 2008 that if you have a neck problem or chiari malformation, either of those, they can get aggravated by the wax and wane of M.E. viral inflammation, so it can be hard to figure out chicken and egg, whether I re-irritate neck mechanically or viral titers maybe up when its worse I don't know, sometimes I think I do. I havent been able to tolerate manual physical work on my neck since the early 90s tho so that is no longer a remedy, too delicate. sometimes anti-histamines help some but they make the brain fog, which yes, I do have, worse. Its interesting tho, neck problems can cause a lot of problems and even trigger autoimmune, irritation of the nerves over time can effect immune system. This exfootball player talks about how getting work done on his neck helped him: http://www.chicagotribune.com/sport...on-85-bears-film-spt-0128-20160127-story.html
     
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  7. TiredSam

    TiredSam The wise nematode hibernates

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    Sounds just like the headaches I used to get, although luckily mine only lasted for weeks rather than 18 months. General headache medication didn't touch it. From the back of the head, or across the forehead and at the sides, with head pressure and brain fog. I never found a remedy, but since my ME has improved due to disciplined pacing and cutting down activities, the headaches have faded and only return when I exceed my limits. I had a 6-week headache once, and would often lose 10-18 days to headaches per month. Now it's 2-7 days per month. My ME headaches are easily distinguishable from a normal headache, and are just as you describe.

    During symptomatic periods if I lie on my left side at night I get a headache, if I lie on my right side I get a milder headache, and if I lie on my back I have the best chance of no headache, although if I lie on my back and let my head fall to the left, my left-side headache starts again. It's wierd how my head position at night can make my headache worse or better.

    I've had 4 MRI head-scans in the last 3 years, brain inflamation has never shown up.

    Sorry I can't be any more help except to say that your headaches sound typical to me, and my situation did end up improving.
     
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  8. Webdog

    Webdog 84-91% are undiagnosed

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    Try icing the achy areas. Don't over do it, but I find even a couple minutes of ice applied to the right spot often work as well as 800mg ibuprofen for headaches.
     
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  9. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    @Lucy1996 sorry to hear of your ongoing headache. I've had migraines from 4 year old but after the virus I had a non stop migraine for 2 years 24/7 with projectile vomitting. Also bedbound and parslysed with the ME.

    Nothing touched the pain so i had no painkillers for years. I was awake 3 days in a row as sleep was impossible so i just had to wait for exhaustion to overide the agony to knock me out, then i'd sleep for a couple of days on and off and then back to being awake for days. Even when i did manage to sleep, the pain was in my dreams too and had horrific constant nightmares. Because i was in darkness day and night, it was just one long torture-fest never knowing if it was morning or night, with a constant battle to maintain sanity.

    The only thing i found to eventually break the cycle was Syndol, which was paracetamol, codeine, caffeine and doxylamine succinate. They only worked when crushed into a powder and taken with a mouthful of fizzy coke to heighten the caffeine and these only worked after the first 2 years (before this nothing touched it)

    The relief the first time this happened after trying everything else was indescribable. Those tablets saved my life.

    They've now been stopped but can still be bought from south africa in an emergency but they cost £40 for a box of 10. I made my box last a year or so, using them only when it was horrific again.

    I have to make do with a powdered paracetamol and codeine mix now, it works enough but 20 years later... I still have the ongoing migraine but i get a few hours reprieve here and there because of the tablets.

    I also still buy the doxylamine succinate part of the drug from america and use it before bed. Its a muscle relaxant, anti-histamine and sold as a sleep aid. Its called 'kirklands sleep aid' its the only thing that has enabled me to sleep during night times and enabled me to have a vaguely normal bedtime at around 2am even when my brain is screaming.

    The only other drug i've found that enables a break in the non-stop cycle is epilum. An epilespsy drug. But the side effects are way too much to take daily. They do work as a one off here and there to put a break in the pain and give some breathing space.

    These are the only 2 things that have had any effect on me and i've tried everything in the last 35 years from hypnosis when i was 8, atlas chiro corrections that had no effect, to an exorcism when i was 24! (It was offered to me, i didn't go looking for it lol and for the record left me screaming in agony for days afterwards) The migraine really didn't like it!

    The only thing i'm still waiting to do is a daith ear piercing but i think this is specifically for one sided migraine so might not be of use for you.

    I really hope you find that magic bullet or combination punch to get at yours and immobilize it, even if just enough to give you a breather and allow you to gain control even temporarily.

    Even just getting a few hours reprieve can be enough to give you the strength to chip away at it and gain some ground. Once it gets a hold again and digs its claws in, its all the more difficult to start loosening its grip again.

    I talk about it like its a living entity. It definitely feels that way sometimes :thumbdown: mine no longer has power over me the way it once did but i'm always keeping it at arms length and it never stops trying.

    Its chained to a wall at the back of my brain somewhere always waiting to pounce :confused:

    I hope you get some relief soon. There might be things you've tried that haven't worked in the last 18 months but those same things might work a little later down the road so its worth repeating some ideas/drugs at different intervals. Hang in there, things will improve in time :hug:
     
  10. Valentijn

    Valentijn Activity Level: 3

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    It's been so long since I had it, that I don't really remember. Just that it was constant pressure, and the usual headache over-the-counter drugs didn't touch it. The ME-headache only comes back if I forget to take the fish oil capsules for 24 hours, and it's been years since that's happened.

    But your headache sounds like what I was getting with mild diabetic ketoacidosis, and then lactic acidosis from a reaction to diabetes drug, over the past month or two. Primarily pressure at the back of the head on both sides. Lancing pains would hit one side or the other at the front sometimes, and occasionally a band on both sides over the top middle of my brain.

    Probably a bit of an inflammation thing.
     
    Last edited: Feb 2, 2017
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  11. Snow Leopard

    Snow Leopard Hibernating

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    I've tried all sorts of things for my permanent headache, but they don't seem to work (some painkillers dull the pain, nothing else works). But my headache is mostly at the front top of my head (it's not a sinus headache).
     
  12. hellytheelephant

    hellytheelephant Senior Member

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    Sorry to hear about your headaches.
    I had very frequent headaches with ME when I was younger. My husband ( who may/may not have ME), has had a constant and disabling headache for 10 years. Medication barely touches it- I believe the term is New Daily Persistent Headache.

    It is important to rule out anything being else wrong- my husband has had brain scans, seen neurologists etc...then, after you have excluded everything else, you have to self- manage.

    We both recommend an excellent and really funny book on the subject:
    Chocolate and Vicodin- My quest for relief from the headache that wouldn't go away. By Jeanette Fulda

    msg me if you have any questions.

    Hx
     
  13. Crux

    Crux Senior Member

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    Migraines are associated with increased nitric oxide. Bacterial infections produce it, and the body produces it to fight them.

    Taking antibiotics, such as rifaximin and doxycycline stopped mine. Doxycycline is an inhibitor of nitric oxide production.

    Also, brain iron deposition is another possible cause of migraine. Unbound iron is toxic, and produces free radicals, as well as nitric oxide.

    Getting rid of infections, as well as reducing iron load has stopped my migraines, which originated in the occipital area.
     
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  14. .Chris.

    .Chris.

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    You have my sympathy. I've also had a constant headache ever since I went down with this illness 4 1/2 years ago. Fortunately it has got less severe as I have generally improved but it's still troublesome. In fact it’s probably almost tied with the fatigue as my most troublesome symptom.

    Your headache sounds slightly different to the one I experience - mine is more like the one Snow Leopard describes. It's at the front of my head, going up one side almost in a line. I also have a pressure-like feeling, though this is less severe than it used to be. A neurologist that I saw said it had features of both a chronic tension headache and migraine, which I gather is a common description of ME headaches.

    Like everyone else, it seems, I found that ordinary painkillers such as paracetamol and ibuprofen don't touch it. My doctor eventually advised me to stop taking them as overuse can actually cause or exacerbate headaches.

    One thing that I have found helpful is propranolol – this is a beta-blocker that is frequently used to prevent migraines and/or chronic tension headaches. This reduced my headache severity by over 50% within a week or two of starting it. Other things I’ve tried (acupuncture and the dreaded amitriptyline) have been less successful.

    It’s good that you’re getting a head MRI scan. In my case this didn’t show anything of any consequence, but it’s good to rule out other causes of your headache/other symptoms. Has this been ordered by a GP or by a neurologist/headache clinic?
     
  15. ahmo

    ahmo Senior Member

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    I found that nasal insulin relieved me of my ongoing headachey feeling. These were not intense painful headaches, but persistent feeling of static inside my head and unpleasant tightness, so I call it 'headachey'. I'm on my 2nd bottle of insulin. the first lasted 3 months. When I was running out, and so using less, the headaches returned. Now they've gone again. I also use LDN (low dose naltrexone) for overall inflammation. I can't recall whether it impacted my head, but it certainly increased my stamina. Good luck.

    http://www.lostfalco.com/intranasal-insulin/


    http://www.healthrising.org/forums/threads/the-benefits-of-intranasal-insulin.4820/#post-23758
     
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  16. Tiger Lily 813

    Tiger Lily 813 Senior Member

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    I'm sorry to hear that you are dealing with this. I had chronic migraines for about a year when I was first ill, and tried several things from a neurologist that didn't work, then tried every cleanse and cleaned my diet, took so many supplements.
    What finally worked for me was trazodone, taken for a short period of time. And the trazodone gave me a different sort of headache when I was on it, but once I weaned off of it the headaches were gone. I was prescribed the trazodone by a rheumatologist for fibromyalgia symptoms.
    Hoping that you find your solution very soon <3
     
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  17. PatJ

    PatJ Senior Member

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    A PEMF (pulsed electromagnetic frequency) device might be useful. Joseph Cohen has an interesting article on the ICES PEMF device. He also has an article with 31 natural ways to deal with various types of headache.
     
  18. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    This is really interesting as i've been on anti-oxidants for 10 years now and they did help with the migraine in the earlier years before they removed half the ingredients.

    The bacteria idea I also find very interesting as I was on an anti-biotic a couple of years ago (can't remember name off top of my head) but it doubled up as also treating bacteria in the brain... This anti-biotic made me migraine free for about a week or so, the longest i've gone without one since the ME.

    I was almost certain it was down to the anti-biotic, told my doc, and she pretty much laughed at me :bang-head: so i didn't get to try it as an experiment with longer use.
     
  19. Dechi

    Dechi Senior Member

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    @Lucy1996 I have been having a headache for 2 weeks straight now, on and off but mostly on. Today I had a massage and the therapis also did my head at the end of the session. I was exhausted so I kind of fell asleep and didn't even feel her doing it. She told me after. She said I was so relaxed that some muscles were pulsing in the side of my neck as she massaged them. Apparently it's a sign of relaxation. Muscles in my head also lightly pulsed, she had never seen this. Funny thing, she wasn't even touching where my head hurt, not even close. I suppose relaxing the muscles and deep tissues had an effect on other areas.

    After the massage my headache was gone. Let's hope it doesn't come back !

    This therapist knows me well, she used to be my trainer and has been giving me massages for years. Now that I have ME, she uses very gentle techniques.

    Maybe try a nice massage by a good professional ?
     
  20. Crux

    Crux Senior Member

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    The credit for this goes to @Sushi . She had brought up to someone about rifaximin stopping her migraines.

    For the last few years, though, I've been searching microbes and various conditions. There are microbes found even in cancer tumors.

    It's not known whether it's a cause or effect, but where there's inflammation, there are microbes.
     
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