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Waking up with daily headaches

Discussion in 'General ME/CFS Discussion' started by dhube32, Feb 6, 2017.

  1. dhube32

    dhube32

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    Hi everyone,

    For years now I've been waking up with a throbbing headache almost every morning. I'd say I have them at least 5-6 mornings out of the week. Needless to say, it makes it incredibly hard to get up in the morning and try to get through my day.

    Does anybody else wake up to this same issue? If so, any guesses on what may be triggering it or ideas on how to combat it? I find the headaches to be one of my most debilitating symptoms. I pop Excedrin migraine like its going out of style but that only works maybe 1/3 of the time if I'm lucky.

    Any and all input would be greatly appreciated!

    Denise
     
  2. ryan31337

    ryan31337 Senior Member

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    Hi Denise,

    I've had very significant problems with migraines on and off for 20 years, sorry to hear that you're suffering. Have you considered that you might be experiencing rebound headaches from overuse of painkillers?

    I had this problem after taking painkillers for migraine too frequently, albeit stronger ones (co-codamol) but I'd imagine the same could happen with Excedrin. Its easier said than done to taper off the painkillers when you feel you need them most, but they could be half the problem. Perhaps a reduction/switch in medication in conjunction with some sort of prophylactic treatment will help, are you seeing a specialist?

    Ryan
     
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  3. dhube32

    dhube32

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    Hi Ryan,

    Thanks for the reply. I hadn't really thought of the rebound headache possibility. Like you said, the thought of tapering off the Excedrin is a bit daunting as a lot of times it feels like its my only hope in getting through the work day. Although half the time it doesn't seem to help anyway. I've never been able to really determine a trigger for the migraines. I'll have to try switching to another type of over the counter pain killer and see if I notice any improvement. Though I'm especially curious about why the headaches seem to be the worst immediately after waking up in the morning.

    I've been to quite a few neurologists who typically want to put me on the hard hitting pain killers which scare me a bit. Normally I come to the conclusion that I'd rather just deal with the headaches then start on a strong medication. I haven't been to a ME/CFS specialist in quite a few years, primarily for financial reasons as most are not covered by my insurance. I also spent the brunt of my childhood bouncing around from doctor to doctor and have just become a bit burnt out and hopeless in my quest for treatment.

    Denise
     
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  4. ryan31337

    ryan31337 Senior Member

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    Yeah, there are 101 reasons you could come up with as potential causes for the headache but I thought I'd mention painkiller rebound as its something you have complete control over and often doesn't occur to people. The other one that perhaps might be relevant to you and not often thought about are sleep disorders.

    Have you been offered a prophylactic treatment like beta-blockers, pizotifen, botox or the like? I made big improvements on pizotifen.

    Ryan
     
  5. dhube32

    dhube32

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    I've been thinking about having a sleep study done but again, that would depend on the cost and insurance coverage but it's something to look into. I tried beta blockers probably 10+ years ago and honestly can't remember my results with them. I'd have to assume they weren't overly effective for me or I would have stayed on them longer.

    I haven't heard of pizotifen before, what sort of specialist prescribed it for you? I know the last neurologist I saw suggested a few things but I don't believe pizotifen was one of them.

    As far as botox, that is something I'm really curious about. I'd love to hear from some people who have tried it and what their results were. Hopefully I can find a thread on here about it!
     
  6. Hip

    Hip Senior Member

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    I occasionally get mild tension headaches, along with muscular stiffness and tension in the neck muscles and the eye muscles. These normally last 3 or 4 days, but are very mild. By accident I discovered that the drug trimetazidine (in a single dose of 20 to 35 mg) will eliminate the headache within 10 hours.
     
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  7. edawg81

    edawg81

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    When immitrex and propranolol stopped working and I had to get off them a steroid methylprednisolone pack was the only thing that broke the daily cycle of migraines.

    As soon as i cut down on those migraine drugs the frequency of my headache decreased. Sadly i do not take much these days, maybe an occasional advil.
     
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  8. Dechi

    Dechi Senior Member

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    I take nimotop to help my ME symptoms in general and I noticed lately it fets rid of my headaches as well. I had to stop it for a while and a few weeks later developed headaches that lasted most hours of the day and had been going on for 2 weeks straight. It took 4-5 days after I took nimotop again and it stopped.
     
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  9. ryan31337

    ryan31337 Senior Member

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    I took it as an adolescent 20 years ago, prescribed first by GP and then later again at higher doses by a neurologist. Its quite an old drug and no longer considered first choice for migraine prophylaxis (beta-blockers tend to be), still useful for some though. It also has mild anti-histamine effects so tends to promote sleep and helps a little if you have itching/hive reactions that some of us get. It does tend to make you put on weight at high doses, but you may find you only need a low dose if you can still function with your headaches normally.

    What I liked about it was that it reduced both the frequency and the severity of my migraine, so I was able to swap out the strong triptan meds for co-cocodamol and then eventually the co-codamol for plain old paracetamol (acetaminophen).
     
  10. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    Hi Denise,

    Hypoglycemia can cause headaches. If you had a fasting hypoglycemia problem over night you might wake up with a headache. Just one of many possibilities.
     
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  11. David Jackson

    David Jackson Senior Member

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    @dhube32, here is one thing that might be the cause which is fairly easy to fix... this stuff I have learned from my herbalist, who has helped me a great deal:

    If your kidney are functioning at a low level, then there will be a build up of rubbish in the body that is not being filtered out. At night the body is trying to filter it out, but can't do very much, so you wake up feeling like rubbish in the morning; a headache can be one part of this.

    One very simple solution is Parsley tea. There are other things, but Parsley tea is the easiest, and works well on the kidneys. Just put some Parsley in a mug, boil the jug, and pour the boiling water in. Leave for 10 minutes and then drink. Never microwave to heat the water. Keep this up every day for a few weeks and see if you notice a difference.

    Of course, there are any number of things like this in the body that may have gone wrong, and may be causing the headaches... this is just one thing you can try which is very simple, cheap and safe.
     
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  12. Skippa

    Skippa Senior Member

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    Could it be bruxism related?

    I used to suffer awful headaches 'cos I grind my teeth and clench my jaw at night.

    Since I started wearing a gumshield to bed, it went away 100% just like that.

    The TMJ muscles are tricky little critters...
     
  13. Mohawk1995

    Mohawk1995 Senior Member

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    Denise,

    Our son's first symptom was waking up with a massive headache and over 50% loss of visual field. Sometimes primarily on his Right and then later on his Left. This led to testing for Brain Tumors, MS, Meninigitis, Vision and Eye, TMJ, environmental factors like Radon and Migraines. In fact we spent 4 years chasing a cure for "Atypical Migraines". What made matters worse was that the only thing he could do to help was to sleep. He gained a little benefit from Celebrex, but he had negative reactions to any abortive medication or really any medication at normal doses. His Headaches seemed to lessen over time, but the fatigue and brain fog actually got worse. He also had some unusual sleep patterns and lots of grinding teeth, snoring, tossing and turning and leg jerks. After having effective treatment for CFS/ME, he has minimal Headaches although he pays closer attention to them than the average person might.

    I would definitely check into getting a sleep study if you can. It may reveal a lot that may be able to be addressed. Would recommend highly against changing anything fast or radically changing sleep habits. CFS/ME doesn't like change. The tortoise wins the race!
     
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  14. Valentijn

    Valentijn The Diabolic Logic

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    Was he tested for genetic mitochondrial diseases?

    Medications using valproic acid, a common ingredient in anti-epileptics, is very bad news for patients who have a mitochondrial disease.
     
  15. Mohawk1995

    Mohawk1995 Senior Member

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    No tests for mitochondrial diseases. He did have a negative response to Topamax among others.
     
  16. Valentijn

    Valentijn The Diabolic Logic

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    That's not a good one either, due to ability to contribute to metabolic acidosis.
     
  17. bertiedog

    bertiedog Senior Member

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    As mentioned on the other thread about headaches and migraines, unbelievably for me I seem to have been cured by Lyrica 25 mg taken on waking. My migraine consultant said he thought it was working more like a pain killer than a migraine preventative. Its the 3rd or 4th migraine preventative I have tried but none of the others worked.

    Personally I do believe it works for me because it gets rid of excess glutamate and enhances GABA by working on the GAD1 enzyme. Guess what I am homozygous for 2 SNPs on this enzyme.

    Its been a month now and only had 2 real migraines which were due to the start of a nasty throat infection and with a small dose of Sumatriptan they were both gone by lunchtime. That is unheard of for me as I was getting daily headaches/severe migraines hence me seeing the migraine consultant at a local clinic.

    To be honest it feels like a miracle but deep down I am terrified that it could stop working because its almost too good to be true. I always felt that my problem was due to excess glutamate because whenever I took a supplement with natural folates I would end up with non stop agonising migraines so I ended up with taking hardly any supplements. This past week I am even tolerating the supplement I used to take for many years which does contact mixed folates (Thornes Basic Nutrients III).

    Looking at the research regarding Lyrica I think it showed that only one third of people responded to it.

    I do hope you find something to help, I literally tried everything but nothing worked for me till now.

    Pam
     
  18. barbc56

    barbc56 Senior Member

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    @dhube32

    So sorry you are going through this. Migraine headaches can be debilitating.

    After years of having migraines, my daughter was prescribed Topamax, which for her was a miracle.

    Of course, what works for one person does not necessarily help another. Headaches do not have a "one size fits all" cause nor treatment. My daughter eventually went to a Headache Clinic which had a multidisciplinary approach. Going this route meant everything was checked out and you get an individual treatment plan. This was when she was prescribed Topamax. If I remember correctly, at the time, it was a relatively new drug.

    Btw, Tylenol migraine contains caffeine and caffeine withdrawal can cause headaches. Don't know if this applies to you, so check with your doctor.

    Good luck and welcome to Phoenix Rising!
     
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  19. jstefl

    jstefl Senior Member

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    Hi Denise:

    I am a long time sufferer, 26 years now. For many years I had really severe headaches on a constant basis. I took Tylenol many times a day with little effect. The only thing that would even reduce the pain was Vicodin, and I was afraid to take that on a regular basis.

    These severe headaches went away while I was taking Valcyte, and have not returned. I took Valcyte in 2008 for 10 Months, and it helped with the headaches as well as many other symptoms. I was left with a constant mild headache, but these were nowhere near the intensity of the pre-Valcyte headaches.

    Three years ago I started on prebiotics in the form of resistant starched, and my headaches became even more mild. After a year of the RS, I started back on Equilibrant, which has helped even more. My headaches are now so mild that I am almost completely off of the pain med. I have not had a severe headache since the Valcyte. What a difference in my life! I lost many years of my life laying in bed with pain that was almost intolerable, and now I almost never think about headaches.

    I credit the Valcyte with bringing me back to life again, My blood pressure had dropped to 80/50, and my pulse had slowed to 50. I couldn't stand without being very careful and deliberate, and was afraid to drive. N+MY BP came back to near normal while I was on Valcyte. I had many other symptoms improve on Valcyte, but I don't want to get too far off topic here. I will be glad to discuss this privately.

    John
     
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  20. santi

    santi

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    Did you test where you sleep for
    • Electric fields
    • Magnetic fields
    • Electromagnetic radiation
     

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