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My wife has been in bed with disabling headaches for 3 years, and ideas?

Posted , 4 users are following.

tipbarentine
tipbarentine

Here are a few symptoms my wife is experiencing:

1. Tension headaches

2. Neck pains

3. Head pressure starting at the back of the head.

4. Hands go numb

5. Eyes feel strained and bulging

6. Feel confused and foggy

7. Kinda out of body, just a weird sensation

8. Vertigo

9. Nausea

10. Uncontrollable leg locking and shaking

She is 39 and has suffered from a non-stop disabling headache and these symptoms for almost 3 years. Almost 2 years ago she started experiencing uncontrollable leg locking and shaking, and all we've been told by neurologists is that it isn't neurological so it must be psychological. We know the tremors must have something to do with the pressure in her head because when the pressure gets unbearable the tremors occur more often, now lasting a couple minutes with a few seconds break between each episode. They used to last longer, but she is on Neurotin, which seems to help a little. This can go on for anywhere between one to a few hours. Also, she started producing audible vibrations in her ear, like her ear is having a tremor that others in the room can hear. Not one neurologist we've seen has ever addressed this, even though we have it on video. She's been tested for Arnold Chiari Brain Malformation and Normal Pressure Hydrocephalus, both coming back normal, so we are at a loss.

Any help would be greatly appreciated!

0 likes, 22 replies

22 Replies

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  • Hope255
    Hope255 tipbarentine

    Posted

    Are you in the USA?
    • tipbarentine
      tipbarentine Hope255

      Posted

      Yes. We live in AZ, and the tests she has taken have been performed at Barrow Clinic.
    • Hope255
      Hope255 tipbarentine

      Posted

      After suffering for 40 years, and three states, I found a clinic that specializes in chiari in Aurora, Colorado. They'll do testing and if your wife doesn't have chiari they will tell you what she has. It's been 9 yrs since my decompression. Don't have headaches but had to retrain my brain. It takes time and patience. 

    • tipbarentine
      tipbarentine Hope255

      Posted

      Thank you so much for that information, and I'm so glad you found the help you needed! I'll definitely look into seeing a specialist.

  • b2wc97455
    b2wc97455 tipbarentine

    Posted

    Hi there,

    I am sorry to hear it ..I was just like your wife but worse - I had decompression - the best decision I had ever made even though it was too late for me to decide..even though I may say that my surgery was successful - I am still have an occasion stiffness on right arms..sometimes lower back (L1 & L2) so..I put up with it..I am drug free ..I have to do yoga each morning to make life easier..drinking 2 ltrs of water each day..change life style and try loosing weight.so the advise from Steven was really excellent ..if I have money I would like to have it as well...but unsure why other neurologist/surgeon could not do what this hospital can??? - get 2nd opinion - be firm and ask them to decompress it..put in writting...be persistent

    • tipbarentine
      tipbarentine b2wc97455

      Posted

      Hi! Thank you for responding! We haven't even been able to get a diagnosis yet. They put her through several tests in Phoenix at Barrows but then told her what she is experiencing is not neurological and referred her back to her PCP, who doesn't have any idea how to help her. Being sent away really broke her spirit, and we don't really know what to do next. The neurologists at Barrow weren't Chiari specialists, but they acted like they know a lot about it. I'm not 100% sure she has Chiari, but I do know her symptoms fall in line with it, and her sister finally did get a diagnosis 9 years after first experiencing a lot of the same symptoms. That is why I posted this under the Chiari section. We are trying to avoid a 9 year wait for diagnosis.  Her PCP has told her she needs to learn to live with the pain and this could be her life... we aren't going to accept that.  Thanks again for the info. Do you think there's any chance they missed the csf fluid obstruction? She experiences so much pressure and knows the difference between migraines and what she is experiencing. They keep telling her it's migraines, but none of the treatments for migraines have ever helped.

    • b2wc97455
      b2wc97455 tipbarentine

      Posted

      Hi there, I promise you that is definitely Chiari ..I can bet any money on it..just be persistent and firm write to them that learning from lots of website ..its seems that is the symptom..you would like for them to give a MRI/Cine test..from there they will be able to denote and confirm - THAT IS 100% Chiari..just remember...as well ..its not the length of the hindbrain ..its whether there is obstruction on the csf flow or not..easy thing to do as well is have a Lumber Puncture test..they will asses what is the flow..(general speaking normal flow is between 9-11..anything above that (14..on ward) classify as high flow..that is quite disturbing...and need to be addressed as soon as possible..I really would like to know about that Barcelona thing...actually I am going to write to our (UK) Neuro Health Dept. if they can do this in the UK..but unsure if they have to undergo decompression before able to have this action...sound much cheaper then having decompress.. please...please go and write to your health care professional..make sure you copy to your insurance as well as Department Health..expressing that it is really effecting your daughter Quality Of Life..and ask them to take responsibility of their decision get a PRO BONO lawyer just to prepare that you mean BUSINESS...let us know how you are getting on..dont leave it too long..I wished I listen to my neurologist/neuro surgeon so It wont let my nerve..damage..please..take control...dont be put up with their lack of knowledge..

      AND DONT FORGET TO PRAY

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