Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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valium makes fatigue go !!!

Discussion in 'General ME/CFS Discussion' started by crosser, Jan 30, 2016.

  1. crosser

    crosser

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    hi all.

    i have severe m.e and bedbound.. had to go to hospital 2 weeks ago as our fire as giving out co fumes but all was ok after having blood checked.. the wierd thing is that i can only stay in an upright position (sitting or standing) for a few minutes before feeling unwell... as im an agoraphobic i took 4mg of valium before getting in the ambulance.. they made me sit upright for the 20 minute journey then i had to walk into the department then sit for 2 hours until seen and then walk out to my wifes car in the carpark.... why is it that my body was able to do that when normally can only manage very little..... thanks
     
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  2. Hip

    Hip Senior Member

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    It could be related to the way Valium reduces excitation of neurons.

    Neurons become more excited when their NMDA receptor is activated, and less excited, more relaxed when their GABA receptor is activated.

    Valium and other benzodiazepines work by effectively increasing GABA receptor activation, thereby calming the neurons.
     
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  3. crosser

    crosser

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    thanks for that, i think i get it... only thing i dont understand is surely after that amount of exertion i should of had a huge crash !! felt a bit under the weather but i think that was the stress of it all....
     
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  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Valium can help prevent HR spikes--has that been a problem for you--elevated HR on sitting and standing?
     
  5. crosser

    crosser

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    on standing or sitting up my hr stays the same but blood pressure shoots up to 160/105 .... its strange because i feel exhausted even though my hr hasnt gone up....
     
  6. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    I have some relief in fatigue also with xanax...Good to know that diazepam gives a similar relief...
     
  7. Martial

    Martial Senior Member

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    Maybe look into something that could offer the same benefit without the addictive qualities? Benzos can be extremely difficult to come off of once a dependency is built.
     
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  8. Bob

    Bob

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    Clonazepam has a mild but consistent protective effect for my overall ME symptoms and post-exertional malaise. Lorazepam relieved Whitney Defoe of some brain fog when he had a recent hospital visit. If diazepam helps you, I suggest also trying gabapentin or pregabalin. Gabapentin worked for me in a similar way to clonazepam, and it was more effective/protective, but unfortunately I experienced severe side effects that I couldn't tolerate.
     
    Last edited: Mar 26, 2016
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  9. roller

    roller wiggle jiggle

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    it eases muscle tension, therefore its recommended for clostridium infections, as botulinum and tetani.
    i once took valium and also felt magic: energetic, awake, brain fog gone.
     
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  10. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Anybody have any suggestions for less addictive, fatigue lessening meds...
     
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  11. roller

    roller wiggle jiggle

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    fighting the cause

    perhaps there are: Labetolol, esmolol, clonidine.
    but it seems valium is the most effective one and everything else is at least as sedating.
     
    Last edited: Jan 30, 2016
  12. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I've been sick for 25 years and there have been only two things that have helped with energy in a major way:

    1. Effexor (venlafaxine) XR: Extended release (XR) form is much easier on the stomach than immediate release. Take in the morning, otherwise you risk insomnia. If you need to titrate a dose, the capsules can be opened.

    I can no longer tolerate any form of Effexor due to nausea and worsening of palpitations.

    2. DHEA: take only in the morning, otherwise you risk insomnia. A good starting dose might be 10mg for a male, less for females. Sublingual forms or tinctures bypass the liver, so those forms are recommended over tablets. DHEA will eventually suppress cortisol, so ideally you'd only want to be on it a few months. Naturopaths and integrative doctors are good with this type of hormone balancing if you want better guidance.

    I've seen Ralph Golan MD in Seattle and he describes how he uses DHEA here:
    http://www.ralphgolanmd.com/adrenal_exhaustion.htm
     
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  13. Kati

    Kati Patient in training

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    It could have been adrenaline rush/stress response.

    Sending best wishes
     
  14. taniaaust1

    taniaaust1

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    "the wierd thing is that i can only stay in an upright position (sitting or standing) for a few minutes before feeling unwell... "

    You sound like you should be seeing a specialist in autonomic disorders. BP shooting up to 160/105 on standing is a autonomic system problem.. orthostatic hypertension .. see the Wikipedia I once put together a page on this. This untreated puts a person at risk of other serious issues.

    You probably should be tilt table tested (but you'd need to be off of meds which could affect it to do it or otherwise the result may be impacted).
     
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  15. justy

    justy Senior Member

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    Hi - glad you managed the hospital visit well!

    A couple of things stand out for me. Agoraphobia - were you agoraphobic BEFORE becoming ill or after? I have struggled with this at times in my life and I realise now that I am not agoraphobic, it is part of being ill and trying to push through - for me it was a protective mechanism - I actually WASTN safe going out on my own or walking around, in fact I was very ill with ME , but was pusghing through it so felt anxious whenever I went out, Add to that derealisation 9perhaps caused by my bacterial infections) and I looked like someone with agoraphobia. But it couldn't be treated as such because my anxieties about driving a car or walking around in the shops was real - not a phobia, not unrealistic considering how ill I was! It is also listed as an alternative symptom of Lupus by Dr Graham in the alternative St Thomas criteria - he sees it in a lot of his undiagnosed patients.

    Valium - is it possible you have some kind of Mast cell disease that ha not been diagnosed? Benzos are Mast cell stabilisers and fatigue can be a massive issues for people with Mastocytosis and MCAS. I have MCAS AND M.E, and find valium helps me to do things I couldn't otherwise do. I also found my fatigue has lessened a little taking the mast cell stabilizer Ketotifen.
     
  16. Skippa

    Skippa Senior Member

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    Valium for me precipitates depression.

    The long half life keeps me in a zombie, depressed, apathetic and anhedonic state for a week or more if I take it more than one day in a row.

    And that's only 2mg.

    The last time I took it it caused a night long chained panic attack response, that was horrible, considering it's supposed to do the opposite!
     
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  17. lookinglass

    lookinglass Senior Member

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    Lorazepam 1mg works for me to keep IBS at bay if I wake feeling nausea.
     
  18. crosser

    crosser

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    thanks for all your replies, some things for me to look into.. i was on effexor and stoppedtaking it in june and had my first crash which was massive in the august... wonder if thats anything to do with it....

    ive been agoraphobic for 10 years and cfs symtoms started 7 years ago.. but suffered with severe anxiety for last 15 years... im not scared of places or going out, just scared of losing control away from home....
     
  19. justy

    justy Senior Member

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    It was found recently I have Lyme, Bartonella and chlamydia pneumoniae - these kinds of bacterial infections can commonly first appear as psychiatric symptoms like anxiety, panic attacks and agoraphobia. My ill health relapse came alongside these awful debilitating symptoms. I personally believe they can be related to the health problems and are not necessarily psychiatric in origin.
     
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  20. crosser

    crosser

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    my cfs team have asked my gp to test for lymes so waiting to hear back.... its possible as my cfs started when we lived in the forest of dean..... i see you went for the eco living as we did but had to sell up as i could no longer manage the up keep with the fatigue.... i was gutted....
     

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