I could really use some good vibes

    • Gold Top Dog

    I could really use some good vibes

    I hate to ask but I am just so upset and frustrated.
     
    A little history (I will try to make this short):  In August '05, I began to suffer from a neurological disorder that no doctor I have yet been examined by has ever seen before.  I have been to specialist after specialist, and as yet, nobody has any answers.  The condition basically involves a VERY painful headache, always in the same part of my head, and the right side of my body going numb.  The symptoms last between 2 and 5 minutes, and then they go away.  During the headaches I am unable to move, speak or absorb any information.  This happens to me between 20 and 40 times a day, EVERY day, and has for 10 months.
     
    I recently had a meeting with my neurologist and some specialists in the field of unusual primary headaches.  Primary headaches are headaches NOT caused by something like a tumor or an aneurysm, they are "just headaches".  These specialists recommended some new drugs to try, I started the first one a little while ago and if we have no luck with that, there are 2 more - all 3 belong to the same drug "family".
     
    So today I went to the doctor for a (presumably) unrelated medical issue that has recently reared it's ugly head.  I won't go into details, but basically now my doctor is pretty sure I have developed a blood clotting disorder - I need to have blood tests next week, but he is pretty convinced.  What makes this REALLY BAD is that if I do, it is DANGEROUS for me to be on any drug in the only family of drugs that have any hope of curing my neurological problem.
     
    I don't know where to turn or what to do anymore.  I am being treated by some pretty eminent doctors, these guys do know what they are doing - and I have just basically been told that stopping my headaches could kill me.
     
    I'm so frustrated....am in tears...
     
    Kate
     
    • Gold Top Dog
    Wow. [sm=sad.gif] What a scary situation. Hopefully the doc's hunch is wrong, and it isn't the blood clotting disorder. Keeping our fingers and paws crossed for you. {{hugs and sloppy Rupert kisses}}
    • Gold Top Dog
    I am so sorry! We'll be thinking of you and Joey sends you big kisses!!!
    • Gold Top Dog
    how awful. I'll be hoping that the Doctor is misdiagnosing what's going on and that it is something simple and easy. [sm=sad.gif]
    Gracie sends you cheer-up happy licks.
    • Gold Top Dog
    Gosh Kate, I can only imagine how scared and frustrated you must feel.  First, try to be patient until you get the results on the blood-clotting disorder.  No sense imagining worst case scenarios, if it isn't necessary.  Second, keep in mind that there might be other viable options for treating the headaches.  Perhaps accupuncture?  Maybe biofeedback?  As we know from the issues we all deal with in regards to our pet's health, there sometimes alternatives, and even alternatives to the alternatives [;)].  I know it's hard, but try to keep a positive outlook knowing that this may just be something you get to become super knowledgeable about and then you can educate the rest of us - hang in there k?
    • Gold Top Dog
    Kate, my prayers are with you and your doctors to resolve this.  And don't feel bad about coming here to talk...that is what this community is all about.
    • Gold Top Dog
    I hope all goes well.  I am not sure if by blood clotting you mean like if you get a cut, the blood does not clot, or if it is an issue of getting blood clots.  If it is the first, please know there is a product out there called QR powder that will stop the bleeding almost instantly.  If you'd like more info, PM me... my bf sells medical supplies and he raves about this thing and used it many times.  He can help you find someone who sells it by you.
     
    Please keep us posted and I am sure worrying will do no good, so be as calm as possible.
    • Gold Top Dog
    What a scary thing to hear!

    Lots of healing thoughts and prayers your way.
    • Gold Top Dog
    I hope this gets settled soon for you....
    My first thought was a tumor putting pressure to cause your headaches, but you said that's not the case...
    Do the doc's know of a  medication that does not react badly with the blood clotting medicine....(are you on Cumadin?)
    Please be careful, and know that we're all thinking of you...
    • Gold Top Dog
    I don't think there's anything more frustrating to deal with when it comes to health than neurological issues.  I have a friend who has been struggling with abdominal pain that cannot be diagnosed after over 2 years of tests, drugs, procedures, etc.  They've told her it's just some kind of nerves-gone-haywire thing, and that she'll have to work on pain management.  The frustration is terrible - and the constant up and down of being hopeful, then to have the hopes dashed.
     
    The only two suggestions I can make probably aren't much help.  One is that a friend of mine suffered from terrible headaches most of her adult life until she had a hysterectomy, then they stopped.  Not that I'm suggesting you get a hysterectomy, but perhaps it's hormone related?  Too much or too little of something, imbalances???  The other thought I had probably isn't helpful, depending on where you live.  A woman I worked with years ago was treated at some highly regarded "headache clinic" in Connecticut - I want to say Greenwich, or Fairfield County.  Apparently that's all they focus on.  Maybe you could search for it online.  You said your doctors were very respectable, so perhaps you're already in the most capable hands.
     
    If you find out you can't take the drugs due to the clotting disorder, then I agree that some alternative options would be worth a shot.  My OB/GYN had such migraines that she had to cancel surgeries sometimes - and acupuncture was the only thing that got them controlled.
     
    Best wishes - I know how discouraging it is to deal with health issues that aren't clear-cut things.  Take care.
    • Gold Top Dog
    Oh wow. Best of luck to you. Fingers, toes, and paws crossed on this end.
    • Gold Top Dog
    Wow.  What a miserable thing to have to go through that many times a day.  Hopefully the doc will be able to figure out something for you.  Fingers and paws crossed here, too.

    Joyce
    • Gold Top Dog
    Oh Kate that is terrible. I am saying prayers for you, that everything will work out. Try to hang in there I know about chronic pain, it's hard work and very exhausting and depression, please try to keep your head, that they can't fix so easily. Do you have someone going w/ you to your dr. appts. ?
    • Gold Top Dog
    Thank you everyone, I really appreciate this.  Last night it was all I could do to get through Ben's first puppy class.  It was supposed to be an occasion and instead I was just preoccupied.  [sm=sad.gif]
     
    I will try to answer some questions:
     
    We are pretty certain it's not a tumour, since all my original scans were clear.  I think they may do some more scans when I am referred to a new neurologist.  There is a guy in London who is apparently the be-all-and-end-all of unusual headaches, and I am due to be referred to him.  He discovered a while ago that sometimes headaches are caused by grey matter cells growing in an abnormal way.  It won't interfere with brain function, and can only be detected with very high resolution brain imaging, so it can be tricky to discover if that is the problem, but they may scan me for that.
     
    I have undergone several "alternative" treatments, to no avail.  This was incredibly disappointing to me, since I would rather see an acupuncturist or a cranial osteopath than be on drugs forever.
     
    By "blood clotting disorder" I mean the blood won't clot.  Unfortunately, powder to stop the bleeding will only help if I cut myself.  Internally, and at "that time of the month", it causes a whole host of other problems.
     
    It's not Cumadin I am on right now, it's something called Lamotrigine.  It's the latest in a very long line of dugs the doctors have been throwing at me in the hopes that something will stick.  One further complication here is that I am naturally immune to most commercial painkillers and various prescription drugs of various kinds.
     
    It is really frustrating.  Getting a diagnosis has been like nailing down a blob of mercury.  Every time we think we have it...
     
    And yes - my fiance or my dad go with me to every appointment.
     
    Again, thank you.  I am so hoping my doctor is wrong about this.
     
    Kate
    • Gold Top Dog
    What a horrible thing to be goingn through.  I will keep you in my thoughts and please keep us posted on where this goes.  Have they ruled out seizures?