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Thread: Headaches are driving me crazy...

  1. #11
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    Default Headache

    It may be that the variability and unpredictability of these headaches is related to the Ehlers Danlos condition.

  2. #12
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    Yeah it sounds like it possibly could be a leak. AVOID lifting, Straining ( bathroom), blowing your nose, bending over etc, etc, etc.... First try to lay flat as much as possible, since your leak is new it may heal fairly quickly however you have to provide the right conditions for this to happen.
    Good luck... Dagaz
    Brain/Pit tumor=17 brain surgeries 20year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, tension pneumatocele, ( air under the skull next to the brain), 2 craniofacial craniotomies, several shunt revisions, 7 bifrontal craniotomies ... Dag "If I started crying I wouldn't stop!

  3. #13
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    Can ehlers danlos cause headaches then Mal? I know post orthostatic tachycardia can cause headaches - maybe they are related to that but the headaches have changed - I used to get just daily headaches not positional like they are now.

    Dagaz, I do lay down loads (too much!!) but sometimes I have no option. Coughing, sneezing (bad effect on the headaches), and bending do seem to have an effect - I can help the bending but not the other two. The headaches have eased now. I did wake up yesterday, stood up and got a headache but it didn't go any further than that thankfully!

    Just one more thing, I am not sure if I have asked this on this thread already but do any of you get a burning hot feeling at the base of the skull/top of the neck. I have even had a cold wet feeling there too - very odd feeling.
    Last edited by Peglegs; 10-02-2011 at 02:36 AM.

  4. #14
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    Default Headaches

    It might affect the headaches, don't know if it would cause them.



    Quote Originally Posted by Peglegs View Post
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    Can ehlers danlos cause headaches then Mal? I know post orthostatic tachycardia can cause headaches - maybe they are related to that but the headaches have changed - I used to get just daily headaches not positional like they are now.

    Dagaz, I do lay down loads (too much!!) but sometimes I have no option. Coughing, sneezing (bad effect on the headaches), and bending do seem to have an effect - I can help the bending but not the other two. The headaches have eased now. I did wake up yesterday, stood up and got a headache but it didn't go any further than that thankfully!

    Just one more thing, I am not sure if I have asked this on this thread already but do any of you get a burning hot feeling at the base of the skull/top of the neck. I have even had a cold wet feeling there too - very odd feeling.

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    Hi Peglegs, I was wondering if you are going to the National at Queens Square? I was under them for a year (Dr Matharu) So if thats the case I can tell you quite a bit about how they work etc.

  6. #16
    Distinguished Community Member Barque's Avatar
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    Quote Originally Posted by Peglegs View Post
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    I am at the end of my tether with headaches. I have had headaches on and off for about three years but since December 2010 they have got much worse in intensity and have changed from the norm. I had 12 days of constant headache that stopped last week and I woke up this morning and it was there again.I told someone who said I should look up CSF leaks.

    If I tell you my symptoms, can you tell me what you think please, seeing as you are all suffering with this.

    Headache made much worse by standing and lately even just by sitting. Made worse by coughing and sneezing. Gets better when I lay down - but dull headache remains.

    Lots of hearing issues with my left ear since the beginning of this year too but seems to coincide with the headaches. Last week I had intermittent hearing in the left ear, lots of tinnitus left ear (high pitched sound and a hissing), popping sound in my left ear, painful hearing with certain noises. I was pretty scared when my hearing went last week - it was like having headphones on but there was a faulty connection in the left side, and turning on and off.

    Edit to add, I am also aware of a whooshing noise - like I can hear the blood whooshing through the back of my skull and neck with my heartbeat.

    Really nauseous to the point of vomiting esp when I brush my teeth (this never happened before last week) and my right nostril run like crazy.

    This morning, even straightening my head up made the headache worse. I have been getting a horrid salty taste down my throat today.

    I was given an MRI brachial plexus as they thought I had thoracic outlet syndrome as I was getting shoulder, neck and arm pain (left arm)and also numbness in my hand constantly since March 19th 2011. The MRI was clear of any compression in that area.

    I have serious stiff neck pain (not all the time but daily) which is worse when I get headaches(it feels like my spine is getting caught on my skull)- had an MRI and it showed MINIMAL bone spurs not enough to cause this pain and symptoms.

    I am woken in the night by tremors in my upper arm so much so that my arm is really aching and stiff the next morning.

    And I get really sensitve smell - things are just disgustingly strong - normally I have a poor sense of smell.

    I have had painful pins and needles in the back/top of my scalp a few times too.

    I have been diagnosed with ehlers danlos and autonomic dysfunction and read that CSF leaks can be related with ehlers danlos.

    I am due for a neuro appointment in London in a few months but these headaches have me worried.

    I know there are no docs on here, but friendly advice would be appreciated.

    Lou
    Gee whiz Pl! You are really suffering aren't you? How is your blood pressure? That whooshing sound in your ears could be that. I had that before I got on bp meds. Look at your ears up close in a bright light. Can you see the tiny blood vessels? If you can that's an indication your bp is high. The headaches could be migranes. I've had those and have those too every once in a while. What a misery the are. I take some Excedrin and just wait it out. I find they work fairly well to take the edge off.

  7. #17
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    Hi Barque

    I suffer with low blood pressure as I have autonomic dysfunction. Some times however I do get extremely high BP but my Bp was low on the headache days.

    I still have the whooshing but the headaches have gone - the other night it was so loud that I couldn't concentrate on the TV. Still projectile vomiting on occasions but only when I brush my teeth.

    Am pleased those darn headaches are gone :)

  8. #18
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    Hi Lou/peglegs
    When is your appointment in London for?
    How are your symptoms at the moment? Im glad to see that your headaches have gone. I really hope it continues.
    Im feeling pretty ill at the moment, been getting a lot worse in the last month and there seems to be NO let up.
    Do you have a hot head/neck feeling also?
    Which hospital were you under when you were dignosed with the ehlers danlos and autonomic dysfunction? POTs??
    Do you have hypermobility also?
    Hope to hear from you.
    Sarah

  9. #19
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    Quote Originally Posted by hemyinspain View Post
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    Hi Peglegs, I was wondering if you are going to the National at Queens Square? I was under them for a year (Dr Matharu) So if thats the case I can tell you quite a bit about how they work etc.
    Hi Hemi, sorry I missed your post before

    yes it will be with Prof Mathias (Doctor Talkveryfast lol)at Queens Square (is that the same doc as you?). I have asked to be put on the cancellation list as people are having to wait months and months for an appointment. Would be good to hear Hemi :)

    I was dx'd by Proffessor Graham at UCLH - well he confirmed the EDS, said I had DA and Pots.

    My orthostatic headaches come and go in batches - I had a batch in January this year, June and the last one. I am keeping a diary of BP and symptoms to see if it is related to high BP - I usually have really low BP then for one or two weeks at a time, I get ridiculously high BP (I even had my monitor checked lol)

    I have hypermobility 8/9 beighton but also neck (not that it feels that way right now), hips, ankles, toes - basically everything - do you have it too Hemi?

    I do get a terrible burning sensation in back of head/neck (you must get that judging by your question - do you know why that is?) but a couple of times I have also had like a cold watery feeling in the same area.

    I am also being checked as I get petechiae and they are not sure if this is autonomic (why would this be - I thought it was to do with blood vessels!)

    Would be good to hear back Sarah.

    Lou
    Last edited by Peglegs; 10-20-2011 at 11:39 PM.

  10. #20
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    Hi Lou
    I started with Dr Matharu (very abrupt) in 2009, (yeah long wait to see him, and between visits) had various tests including POTs testing, (negatie) caffeine (no change) hypermobility (no) MRI and CT scans without contrast (normal) and finally ICP bolt pressure monitoring under Mr Watkins (hardly any fluctuation in the levels at all, in fact practically nothing) During the ICP bolt monitoring, the wire was deemed to be faulty after a few days and removed and a new one inserted. I think and so do a few other people I have talked to, that the valve on the ICP bolt was faulty. There should have been more fluctuation in readings even if everything was normal. Was supposed to be in for 5 days, but was in for 12 in all. I Was told, via phone via secretary that they wont see me again as I have migraines and that can be treated locally (plymouth)
    I dont know who Prof Graham is, is he a CSF leak specialist? Saw neuro in plymouth Dr Weatherby, who did occiptical nerve injections, made me so ill, no relief, symptoms worsening, and I never have a day without the leak symptoms.
    I dont actually get a burning sensation in my neck and head its just as the day goes on the headache increases and my head feels hotter and hotter towards the end of the day so thats why I like nice soft cold pillow to cool it down. I dont know what petechiae is, never heard of it. Nor do I know or has it been discussed if I have chairi or EDS.
    I have written back to London to beg to be seen my Mr Watkins again (he was the one that did the ICP bolt) to discuss further diagnostics as I know beyond anything that I have a leak but I am at the end of my tether because no one will accept it or even investigate further. I have not had any myelograms, and even though a radio nucleartide in 2008 carried out over 3 days showed I had a leak (I was mobile between scans, going back and forth to hospital, driving and living a bit) Bristols Frenchay carried out another one but only oer 24 hours and I had been an in patient for 12 days before hand on bed rest so there was pretty much zero movement of the CSF anyway and Im always loads better when Im on bedrest. So had there been a leak it would have been so much more difficult to detect.
    Ive never checked my BP, I have constantly low BP between 80/40 to 110/60 at its highest. But I was rigged up to a BP monitor for 24 hours when I was in london, again nothing particuraly unusual according to them.
    I was put up in a hotel for my visits to London and an in patient during the day. Lots of waiting around. Ive heard Dr Mathias is good, so is Shanahan but for me I feel totally let down because now that they have referred me back to Plymouth, plymouth have said they cant/wont do any more. They say they are extremely reluctant to do any invasive tests given my history, yet I have begged for them to do so because if I do have a leak and they dont test how will they know? I have been through all the medications most people have, nothing touches this head. My back and legs hurt all the time, and recently I have started getting numbness and tingling in my arms too.
    I would love to be able to say that my headaches come and go in batches, but they dont, they are just worsening as time goes on. I am in tears every single day, towards the end of the day. I have been suicidal, seriously depressed, and am very desperate.
    I am now applying through 'The Exceptional Treatments' committee to get a referral to the states, Dr Linda Gray, and after a lot of emails back and forth to Dr Weatherby he finally aggreed to back my application. The papers are in and I am waiting to hear.
    We have put the house on the market and if I dont get the referral, we hope that the money from the house will pay for me to go there as I know beyond any doubt whatsoevver that I cannot live my life like this. I have absolutely no quality of life at all now.
    Do you work? Are you able to function normally at times? Have you been seen by any other specialists anywhere in the UK? Or do you know of others that are suffering like us and getting no where? I cannot understand why, given that the NHS is supposed to be way up there in excellence, they can jsut brush me off like this. At least my GP is supportive, unfortunately his wife suffered a CSF leak after giving birth so he has seen the way it affects people on a day to day basis, she was patched quickly and is fine now.
    Not sure if you have joined the CSF leak page on Facebook (900 odd members!!!), or if you have joined CSFleak.org, Im on both and they have really helped me keep going. Everyone is so helpful, friendly and supportive and by god we need that.
    Was good to hear back from you, and would be very happy to talk to you at any time. I wish you all the luck in the world
    Sarah
    ***

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