Discussions By Condition: I cannot get a diagnosis.

CONSTANT daily headaches

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: bren292000
  • October 5, 2008
  • 05:57 PM

Hello I really need some help figuring out what is going on with my husband he is 37.He has had daily (nonstop) headaches for almost a year now. double vision, lip tingles (occasionally) He didn't tell me until 5 months ago ( he didn't want to worry me plus the thought it would go away on its own) The easiest way he could explain how they felt was a constant "brain freeze" we have went to neurologists, eye doctors, chiropractor, and internists I'm really worried wondering if we will ever figure it out.
These are the tests he has had:
Brain MRI: Showed a few tiny spots in the white matter on the frontal lobe which could be the findings in MS, Migraine headaches, vasculitis, head trauma, TIA's
EKG: normal
Eco: normal
not sure the exact name for this test
Bubble test (where they check the pressure in your head): Normal
Brain MRV: normal
Spinal puncture: normal
Tons of blood work: normal
EEG: waiting on results

He also has double vision which he swears he has had all his life just has gotten worse. They gave him prism glasses which he only wears occasionally he only gets the double vision when he is tired or watching tv.

He has tried SOOO many different medications none have worked for him they first thought he had migraines, but in my gut I knew that wasn't it sound, light, none of those bothered him, and where they were constant I just didn't think that could be what it was. They also did the testing they test reflexes and things for MS, and both neuroligist didn't think he had that.
He is on Lyrica 400mg daily, ultram and they do take the edge off of it, but what is causing it. So now im begging for some help! This is such a bad feeling not knowing what is wrong any suggestions would be so appreciated.
thank you so much for taking the time to read this long post.:confused:

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3 Replies:

  • I AM NOT A DOCTOR (I state this for the md on this forum who does not like me posting my experience or the information I have to share).Hi Bren, I am sorry your husband has such medical problems. I had headaches and other head issues for many, many years. I was given all the tests and it took many wrong diagnoses to finally get to a correct one over about 16 years. I had daily headaches -migraines and another kind which doctors couldn't catagorize) for eight solid years. I had vision and hearing issues and much more but that isn't important here. Your husbands MRI showed white spots. MS can cause these like you said, but also Lyme Disease can cause these. Lyme Disease and other tick borne infections fool many a doctor these days. I say this just so you will perhaps think about reading about Lyme and other tick borne infections. The tick in the nymph stage that usually bites us is so tiny that we don't see or feel it. It is literally the size of this perid ( . ) or smaller. Lyme may or may not go into the brain. If you are interested in finding out more you can try: www.lymenet.org or www.LymeDiseaseAssociation.org which will start you off with some reading material. Feel free to email me personally if you have questions. I will be glad to help you find more information. If that information sounds at all like you would like more to read --the new book: "Cure Unknown, Inside the Lyme Epidemic" is available in all good bookstores or can be ordered, and the new film: "Under Our Skin" which can be viewed at specific areas or purchased outright for something like $35. These sources of new and surprising information will astound you with what they share. I know that spending money on things is difficult when you are searching for answers. But this is part of educating yourself and your husband. If you don't find other answers, consider this ihformation. Your husband very well may NOT have Lyme Disease, but it is always good to check out as many resources that you can find. Much good luck and keep posting.
    Anonymous 42789 Replies
    • October 5, 2008
    • 07:24 PM
    • 0
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  • Thank you LIGHT I really appreciate you taking the time to read my post. I have looked into the Lyme disease. My sister had mentioned this to me also, but the symptoms don't seem the same. Also would the headaches be going on for this long? I will defiantly ask his doctor about it. My mind is open to anything at this point I wish we could figure it out and get him better.
    bren292000 2 Replies
    • October 6, 2008
    • 03:24 AM
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  • Hi Bren, Yes, Lyme can certainly cause headaches! I had them for 8 years straight ... After treatment I got better... I still get a couple now and them... but I was in agony for many years with NO answers. Lyme Disease is still misunderstood. It has TWO sides and is the political disease of the century. So correct information is still hard to find. A regular doctor will probably not connect headaches with Lyme unless he is very up on Lyme. Check the Lyme sites I sent you in the first reply. It is very accepted as a symptom with the more liberal side of the Lyme debate. And since I experienced them in particular with Lyme... I can tell you first hand, I saw over 30 doctors of all kinds and referrals, but didn't get answers until I went to a Lyme Doctor (LLMD), Lyme Literate Medican Doctor. If you don't have answers soon, just keep this information to refer to later. I hope you figure this out.
    Anonymous 42789 Replies
    • October 6, 2008
    • 07:42 PM
    • 0
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