Discussions By Condition: Medical Stories

25 years with no help

Posted In: Medical Stories 7 Replies
  • Posted By: karljv
  • November 5, 2008
  • 11:19 PM

I have a condition that is proving next to impossible to diagnose. My legacy is now past the 25 year mark.

MY MAIN SYMPTOMS:

1. I have periodic episodes where I will suddenly have a lurching feeling like I’m falling to one side, but I never do fall. This is often also accompanied by a feeling like my head is in a fishbowl, yet I can hear just fine. This will typically last from 1 second to as long as 5 or 10 seconds. The longer the attack the worse the after affects. After the initial attack I will have vertigo and feel unwell. I will often have more of these episodes after a big one and it can take months to fully recover.
a. These episodes most often come after I’ve put some stress on my neck such as too much physical activity or straining with something that puts tension on my neck muscles. Although I’ve had a few that I can’t seem to trace back to any activity.
b. These episodes leave me in a bad way where I cannot do physical activity or function normally for long periods.

2. Sometimes I will suddenly feel feverish, usually this will accompany other symptoms such as in paragraph #1 above. If I take my temperature it will be normal but I’ll feel suddenly hot and it will slowly dissipate.

3. Vertigo, which always comes with the other symptoms and hampers my walking.

4. I seem to be able to go through periods where my symptoms aren’t too bad and I can live rather normally, although that is more in the past now and lately it’s been rough for me.

5. Oddly I have no pain. I’m not saying I want pain but I find it puzzling that a condition that is SO debilitating causes no pain.

6. Laying on my side is what I have to do to recover. I cannot lie on my stomach at all for any length of time. I can’t lay on a massage table nor a chiropractor’s table either that requires me to be on my stomach. Rest appears to be about the only effective treatment I’ve found so far.

7. I seem to have some scoliosis. My head tilts to the right. I’m not sure how long this has been the case but it’s been a long time.

8. Any kind of physical activity seems to exacerbate this problem. I’ve tried things like treadmills, stationary bikes, walking, they all tend to bother my neck. I’m not sure how but obviously everything in the body is far more “connected” than we may realize.

9. Standing and walking, but standing the most, makes my condition worse. I notice that anything that causes tension in my neck is a bad thing for me. Playing guitar, riding a bicycle or jet-ski. I tried one of those squishy balls thinking that I could strengthen safely that way and even that irritated my neck.

10. Low frequency vibrations such as a dentist drill irritate my condition.

11. It feels like the problem is directly behind my ears in the suboccipital triangle. If I or anyone applies pressure in that area, my condition worsens.

12. Excessive talking irritates the problem area. It makes my neck tight and then I’m in danger of one of those “episodes”.

HOW THIS ALL BEGAN:

My problems started in 1983. I was doing bench presses with a friend and felt something odd in the back of my head during one of the sets. The next day at work (I was a restaurant manager) I was having trouble most of the day with this lurching feeling; as if I was falling to one side and each time it was very sudden. I felt a little out of it too. This dissipated after a few days.

Foolishly I kept lifting weights and the problem gradually got worse and I was starting to have problems with dizziness too. I wasn’t really radical with the lifting but I was in great shape other than these problems with dizziness and this lurching sensation. Finally it got bad enough I had to stop. But the symptoms did not improve. The last straw was one morning at work I turned my head to the right and things went crazy in my head. I felt bad vertigo, lights in front of my eyes and other strange sensations that words cannot really explain. I was out of work 6 weeks. I went back to work and lasted 6 weeks and the last 2-3 weeks were miserable. The symptoms were so bad I had to leave on disability. I never was able to go back.

What followed was two MRIs, one of the brain the other of the neck. I had all kinds of tests done on my ears by ENTs and even a few up at Stanford. I went to a chiropractor for a couple years but that didn’t ever seen to help much. I saw neurosurgeons and neurologists as well as a few orthopedists. I got some speculation but no diagnosis. No test showed anything. A lot of the doctors appeared openly unconvinced that I had anything wrong at all.

I stopped with the chiropractic and finally got somewhat better and went into a different line of work, as a computer specialist. This was sedentary work in front of a computer and it was low-key enough that I could do it without irritating my condition. I got well enough that I could play with my kids, work in the yard, go on two-week vacations and live close to a normal life. I was happy. I always had little flare-ups here and there but nothing that knocked me out for long or seemed too serious. I did have a few of what I call “attacks”, which are attacks that hit me suddenly where I feel like my head is in a box, or like it’s in a fishbowl, yet I can hear normally. This will last for a few seconds or really bad ones might hang on up to 10-15 seconds. I’m always loopy afterwards with vertigo and all the other symptoms and it can take weeks or months to fully recover.

This year things got even worse. I am a part-time photographer and one day after I was taking shots with a particularly heavy rig (around 10-11 lbs) holding it out in front of me, I think this was the end of June. Nothing bothered me right away, but that night I kind of moved my head a little and started having this serious problem with the lurching again and vertigo. This started to clear up but I guess I didn’t take it seriously enough and kept being physical (building shelves for my wife, lifting furniture and moving it into the house) and it got to the point where it was really being a problem. I had another bad attack at the beginning of August. At the end of August one night after moving a cabinet it got extreme. It felt like the worst flu you can imagine going on in my head (but it wasn’t flu, I’m just using that as a comparison) and I just felt ill. I was knocked out of work for 5 weeks. Finally as I was just starting to get back I went to a NUCCA chiropractor (they concentrate on just the Atlas-c1 vertebrae) and that didn’t go well for me. I was out of work again and I still am. All those horrible ill feelings, lurching and sensitivity were back in force. Oddly, I’ve also been suffering diarrhea this time around that just won’t quit – been going on since mid August. That’s a long time for watery stool problems to persist. I’m not sure if it’s related in any way.

MEDICATIONS AND VITAMINS I’M TAKING:

Right now I’m taking: CEFA (essential fatty acids), multi-vitamins, vitamin c, magnesium taurate, and daypro (anti-inflammatory). My GP doctor also gave me a muscle relaxer prescription which I have never taken because my neurologist said not to. I have had blood tests, all normal. No diabetes, no liver or kidney problems. I’m also taking a homeopathic solution called cuprum.

I’m 47 now. This started when I was 22. I’m male. I have a wife and three kids. Never divorced and we have a happy family. I live in Central California. I’m originally from Nebraska.

WHAT I HAVE TRIED TO DATE:

I saw two different chiropractors, a regular chiropractor and a upper cervical specialistic (NUCCA) the NUCCA guy seems to have hurt me, my condition worsened after his adjustment. I have seen two GPs and one homeopathic practitioner. I’ve seen a neurosurgeon and a neurologist again. Had two more MRIs, one of the cerebellum and the other of my neck. Nothing outstanding showed up. I’ve had x-rays too.

I’m considering seeing an osteopath but I’m not sure about that yet.

THOUGHTS GOING THROUGH MY MIND:

How could bench presses cause a problem at the top of my neck? Could it be that it just irritated a condition that was already there? I did have a bicycle accident when I was a kid where it knocked my unconscious for a second or two but I didn’t suffer anything beyond that. The neuro-surgeon suggested it may be more of a vascular problem.

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7 Replies:

  • Anyone out there have any ideas? I'm really grasping at straws here and I'm not sure who to see next or what to try next. My condition is dogging me right now worse than at any other point in the last 25 years and I just don't know why. It was fairly stable for two decades and now this sudden crash. I haven't started doing anything particularly more physical or stressfull lately. I'm looking for as much input as I can get.
    karljv 6 Replies
    • November 11, 2008
    • 02:10 AM
    • 0
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  • Since you are in sunny CA I suggest trying a good acupuncturist who is also a trained Chinese herbalist to help with your problems. I think it would really help you. When were your MRI's and have you had any done recently? Best wishesDOM
    acuann 3080 Replies
    • November 11, 2008
    • 05:34 AM
    • 0
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  • if the neurologist thinks it could be vascular you should check that out. i know decreased blood flow can be felt on one side of the neck like that and also some of the other symptoms you describe. even though it started in your youth it could be a blockage or heart irregularity. ive heard lipflavinoids help balance type problems, is that the same as fatty acids?
    emmarene 34 Replies
    • November 11, 2008
    • 06:30 AM
    • 0
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  • I'm a little worried about going to an accupuncturist before getting a better idea of just what is wrong with me. A healer I'm seeing is worried that if the treatment is done the wrong way my symptoms could worsen. This treatment option is still on the table however. I had two MRIs done 25 years ago and two done in the last 45 days. None of them showed anything that the doctors reviewing them could pinpoint. I still think they should have done at least one MRI with contrast to check my blood vessels. My symptoms are obscure enough that it's hard to point to one area such as muscles, bones, nerves, vascular structures, etc and be sure that's where the problem truly lies. I wonder if there are other types of tests I can take that will help narrow down the possibilities? Since you are in sunny CA I suggest trying a good acupuncturist who is also a trained Chinese herbalist to help with your problems. I think it would really help you. When were your MRI's and have you had any done recently? Best wishesDOM
    karljv 6 Replies
    • November 12, 2008
    • 08:49 PM
    • 0
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  • I think so too. I'm puzzled why none of my doctors have thought to at least take a look at a possible vascular problem. I don't know anything about lipflavinoids. I'm taking omega fatty acids by the jarful as suggested by one of the people treating me. So far I would be hard pressed to state they are doing any good. Maybe it takes a while, I've only been taking them for about 3 weeks. if the neurologist thinks it could be vascular you should check that out. i know decreased blood flow can be felt on one side of the neck like that and also some of the other symptoms you describe. even though it started in your youth it could be a blockage or heart irregularity. ive heard lipflavinoids help balance type problems, is that the same as fatty acids?
    karljv 6 Replies
    • November 12, 2008
    • 08:51 PM
    • 0
    Flag this Response
  • I'm a little worried about going to an accupuncturist before getting a better idea of just what is wrong with me. A healer I'm seeing is worried that if the treatment is done the wrong way my symptoms could worsen. This treatment option is still on the table however. I had two MRIs done 25 years ago and two done in the last 45 days. None of them showed anything that the doctors reviewing them could pinpoint. I still think they should have done at least one MRI with contrast to check my blood vessels. My symptoms are obscure enough that it's hard to point to one area such as muscles, bones, nerves, vascular structures, etc and be sure that's where the problem truly lies. I wonder if there are other types of tests I can take that will help narrow down the possibilities? A properly trained acupuncturist will help you, not cause you to worsen. No offense to your healer, but they are not trained in Chinese Medicine. Ask your friends for referrals, or go online to www.nccaom.org or www.acufinder.com for more info on the benefits of acupuncture. I can't tell you how many patients I see as a "last resort"...they've tried everything else, and finally get relief with acupuncture. Doesn't work for everyone, but I'd say 85% of my patients report relief of their varied symptoms. One test I would check on is your B12 levels. Ask if you have had this checked and what the number is. Also might want to look into your cortisol levels. Get yourself a good probiotic to help with your diarrhea. Might want to get a stool exam done to rule out parasites, clostridium difficile, and other. Do you have nausea and/or vomiting before or during these episodes? Best wishesDOM
    acuann 3080 Replies
    • November 15, 2008
    • 04:14 AM
    • 0
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  • My healer believes in accupuncture, he's just not certain I should try it yet. He wants to know the underlying cause before getting aggressive in treatment. I too am very interested in knowing what is causing my problems. If accupuncture is a viable treatment course, I'll do it without thinking twice about it. I'm most interested right now and getting some advice on how I can proceed to get a diagnosis? Anyone know of any brilliant diagnosticians who specialize in neck/head problems that can check me out? A properly trained acupuncturist will help you, not cause you to worsen. No offense to your healer, but they are not trained in Chinese Medicine. Ask your friends for referrals, or go online to www.nccaom.org or www.acufinder.com for more info on the benefits of acupuncture. I can't tell you how many patients I see as a "last resort"...they've tried everything else, and finally get relief with acupuncture. Doesn't work for everyone, but I'd say 85% of my patients report relief of their varied symptoms. One test I would check on is your B12 levels. Ask if you have had this checked and what the number is. Also might want to look into your cortisol levels. Get yourself a good probiotic to help with your diarrhea. Might want to get a stool exam done to rule out parasites, clostridium difficile, and other. Do you have nausea and/or vomiting before or during these episodes? Best wishesDOM
    karljv 6 Replies
    • November 18, 2008
    • 01:06 AM
    • 0
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