BFS Diagnosis - Problem with Light Headedness

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BFS Diagnosis - Problem with Light Headedness

Postby tim_seattle on January 25th, 2012, 12:30 am

Hi,

I am new to this forum and I have a couple of questions regarding some of my experiences. First, here is my BFS background which all started around mid-October 2011:

Doctor History:
I went to the neurologist in early November complaining about excessive sleepiness and light headed feelings. I had a brain scan MRI, which came out clean. I did see another neurologist a couple of weeks later, but this time I still had the light headedness, but I also had developed muscle twitching all over my body, which I was very concerned about. Based on my physical exam and noting that I had a clean MRI, she stated that I likely had BFS. I also had a follow up meeting a couple of weeks ago where she still beleives this is BFS. I also had blood tests and an eye exam. All normal.

Primary Symptoms:
- twitching all over the body. Mostly all over my legs (uppper and lower). I pretty much have a twitch every 5 seconds or so.
- light headedness almost daily.

Symptoms that have gone away:
- Adnenalin feeling throughout the body
- Insomnia
- Dry eyes
- Numbness & pins-needles feelings in the legs
- left thumb tremor (although it did this again yesterday out of the blue).
- Internal tremor
- Lack of energy during workouts (not every workout was bad though).

After reading many posts on this site, I see that I have many of the symptoms that the other BFSers have as well. But I dont find many that have light headed symptom (at least not to the degree that I have had it). This was actually the very fist symptom I had and it started about a month before the twitching. This is by far the most dehabilitating aspect of what is going on with me. This was pretty much a daily occurance for three and a half months. Normally it would get worse as the day would go on, but would improve after sleeping overnight, only to go through it all again the next day. Most days I could continue on with my normal activities, but with a lot more mental effort to get through the day. But some days it would be too much and all I would really want to do is sit at home and watch TV. Note that eye activity appears to be what makes the light headed feeling progressively get worse during they day. Activities such as shopping at a department store (i.e. looking at a lot of different things) made my light headedness get worse, while activities like sitting on the couch and watching TV would be ok. On a good note, the last week and a half or so, its gotten a lot better (I have no explanation as to why). I can still feel it and it did get worse again yesterday, but for the most part better. Note that this is not dizziness and I dont feel like I am going to faint or anything. But light headedness is the closest term I can use to describe this. So question number 1 for this post is: Anybody else out there have this problem with this condition?

The other part that I struggle with is the anxiety that comes along with wonder what each new symptom means. Like many on this site, I really freaked out about these symptoms fearing MS, PD, ALS. My anxiety skyrocketed early on after reading things online about these diseases. Most of my anxiety has subsided (and I believe the symptoms that seemed to have gone away were likely anxiety related). Note that I am much better at handling the anxiety and I dont let my anxiety skyrocket anymore. But each time I get a new symptom, I still question the ALS thing. The latest thing that has come up this last week is that my left hand is sore. I cannot tell if it is muscle, tendon, or bone soreness. Its more of a soreness of using my hand (grabbing) rather than being tender to the touch. I have not hurt it or overworked it or anything. I seem to have it in my other hand too, but to a far lesser degree. I am aware that the thing to look for is weakness, which does not seem to be the case with me. But the question I have is when ALS sets in, are there any sings that are noticible before weakness? My suspicion is that given all of the other things that are going on with me that do not seem to match these diseases, its probably related to BFS. But I still question this last one, especially since its more isloated to a specific part of the body.


Sorry for the long post (I know a lot of people do this).
Thanks in advance to any information that you can provide.

Tim
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Re: BFS Diagnosis - Problem with Light Headedness

Postby mwagner on January 25th, 2012, 11:55 am

Soreness would be more symptomatic of something like arthritis. Have you considered that? I'm not a doctor, but that is the first thing I would think if someone told me their hands were sore when used. Or if it's one hand, it could be something like carpal tunnel syndrome?

Considering you have seen a neurologist, I don't think you have anything sinister to worry about.

Take care,
Mitra
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Re: BFS Diagnosis - Problem with Light Headedness

Postby mike fla on January 25th, 2012, 5:46 pm

Soreness is a symptom of BFS. I would bet that half the people posting on this site have some level of soreness in a part of their body. I am curious if you have had your vitamin levels checked. B12, calcium, potassium and magnesium are some of the more important ones. I know that low b12 lvls can cause the light-headed feeling you mentioned and also can result in twitching. It can also be a reaction to medication. I had a lot of problems with lightheadedness when I was taking PPIs for acid reflux.
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Re: BFS Diagnosis - Problem with Light Headedness

Postby ImOK on January 25th, 2012, 10:03 pm

So question number 1 for this post is: Anybody else out there have this problem with this condition?

Yes. Rising from prone or sitting, turning the head quickly, but sometimes little movement could trigger it. Sometimes it would cause nausea. The best I can do is say that it was, for me, a constriction in nerves and circulation due to stress and tight tendons & muscles in my neck. Is your neck tight? Is your head supported well while sleeping? Have you tried some gentle neck stretches? It getting worse throughout the day goes in line with tension - perhaps you have an old injury, had a car accident, or a misalignment? Sometimes we are just tense though and this, just like anxiety - you need to get it under control.

Stop looking to match your symptoms - you've been cleared of anything bad and while yes, the symptoms are annoying and often scary, they are not dangerous. If you look for weakness you will eventually find it, and the same with all the other stuff. The new symptoms - why should they mean anything? In example your hand, you are sore - you slept on it wrong, clenched it during an anxious moment, over-used it. That is how muscles get sore - it is normal. If you fixate on it it will just make it worse as others can attest - test it and worry over it and that will do the opposite of it healing. Or maybe it is just the current focus for you.

You have the right idea, not letting your anxiety rule. Now take the next step and get control of the symptoms - stop focusing on them and looking to match them. Look for ways to relax your body and mind, have regular check ups with your neuro to put you mind at ease, and live your life fully. The best revenge (for BFS or anything that plagues you) is a life well-lived. Best of luck.
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Re: BFS Diagnosis - Problem with Light Headedness

Postby tim_seattle on January 25th, 2012, 11:34 pm

Thanks for your replies
MWagner - Yes I have considered carpel tunnel, especially since I use a computer regularly at work. I guess I question the timing of it. It seems like I have some new symptom every couple of weeks. I have never had carpel tunnel or any real pain in that area unless I injured that area (knowingly). I think you are all right in that its probably nothing to worry about, but I admit that its hard to get the bad thoughts 100% out of my head when something new comes up. Especially when its persistant (present for a week) and unexplained.

Mike Fla - I have had some blood tests. Honestly though, I don't know all of the things that they checked for. The doctor that ordered those tests was a doctor that I went to while my primary dr was out on vacation. I did not have a follow up with him as he had just sent me the test results in the mail and stated that everything was normal. I provided those results to my normal GP later and he glanced it over saying it also looked fine. Perhaps for my next visit I will ask him what exactly was tested. I do toke omeprazole (prilosec) for my acid reflux. However, I have been on that medication for just under two years now, so I am not sure if that side effect would take that long to kick in.

ImOK - Its funny you mention the neck. When this first started my neck was tight. I thought that there might be a connection. I brought this up to both neurologists and my GP, even the optomitrist. All said that its very unlikely to cause those sort of things. But I have kept that in the back of my mind as a possible cause. I have had a theory that possibly my BFS symptoms and the head part are not related. But I really do not know. The BFS symptoms kicked in after my anxiety levels went up thinking I might have brain cancer or MS. Even though my anxiety is mostly gone, it seems the BFS parts are here to stay :( . I did note that there were times where my neck was not tight but the light headedness was there, but I really did not keep track of when my neck tightness went away (it was a while ago). Perhaps it takes a while to get better after the neck tightness goes away (if that is in fact the cause).

And regarding my latest symptoms, I do know better. The annoying thing about this is that every time I finally get through my head that the latest symptom is nothing to worry about, a new symptom new comes up and it gets me wondering. I guess everybody handles this differently, and being relatively new to this condition, I do find some comfort in knowing that others have had a similar symptom that has proven to be benign. But you are right, if the neurologist is not worried, I should not either.

Thanks again for your input, and I will post an update if I ever find the root cause of the light headedness.

Tim
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Re: BFS Diagnosis - Problem with Light Headedness

Postby mike fla on January 26th, 2012, 11:54 am

I was on prilosec for 4 years when my problems started. I was having issues with dizziness and lightheadedness. I had no idea what was wrong and had all the tests that you had completed. At any rate, by coincidence I did not take my prilosec for one day and low and behold my symptoms completely subsided. My head was the most clear that it had been for months! I am not saying that the prilosec is what is causing your problems but it did cause my issues. Long term use of ppi's has also been linked to Vitamin B12 and magnesium deficiencies. If you were to find a link between the prilosec and your issues I would not quit the medicine cold turkey. I made that mistake and sufferred tremendously for 3 months before things calmed. I am much better now though. I am even wondering whether I even needed to be on the medicine in the first place.
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Re: BFS Diagnosis - Problem with Light Headedness

Postby mike fla on January 26th, 2012, 11:54 am

I was on prilosec for 4 years when my problems started. I was having issues with dizziness and lightheadedness. I had no idea what was wrong and had all the tests that you had completed. At any rate, by coincidence I did not take my prilosec for one day and low and behold my symptoms completely subsided. My head was the most clear that it had been for months! I am not saying that the prilosec is what is causing your problems but it did cause my issues. Long term use of ppi's has also been linked to Vitamin B12 and magnesium deficiencies. If you were to find a link between the prilosec and your issues I would not quit the medicine cold turkey. I made that mistake and sufferred tremendously for 3 months before things calmed. I am much better now though. I am even wondering whether I even needed to be on the medicine in the first place.
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Re: BFS Diagnosis - Problem with Light Headedness

Postby chicagobfs on January 28th, 2012, 12:40 am

So how do you deal with Acid After stoping prilosec?
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Re: BFS Diagnosis - Problem with Light Headedness

Postby mike fla on January 28th, 2012, 11:09 am

Quitting cold turkey caused lots of problems for a while. There was a medical trial where healthy people (no acid reflux) were given ppis for two months and then quit. These healthy people then had an acid rebound effect and corresponding reflux when quitting the medicine. The rebound effect lasted 1-2 months. The same thing happened to me accept I had been on the medicine for 4 years! I lost about 15 pounds, had upper abdominal pain, indigestion, supressed appetite and thats when the bfs really came on (it actually started while I was still on the medicine. I also had every test known to man and all came back negative. That is why anyone trying to get off the medicine should do a long, slow taper over a few months. At any rate, after the first month my stomach got better and better. I would say that my symptoms are 90-95% better right now. Some of the things I have done to help include eating healthier low fat foods (also staying away from processed stuff), drinking ginger tea which helps promote digestion, taking apple cider vinegar (I know its acidic but it helps), raising the foot of my bed, not eating within three hour of going to bed. The product that I think helped me the most is called iberogast. It is a herbal remedy made in Germany that you can only get on Amazon in the States. It really helped calm my stomach down. I now think I didnt need the medicine and I'm not sure it even helped me at all.

I now think that stomach meds like prilosec are way overprescribed. There are people who do actually need them, like say if you have ulcers or when there is actual damage to your esophogus, but for many other people the symptoms can be controlled by making lifestyle modifications. Studies are now showing that people on these medicines long-term can have a host of vitamin deficiencies. Basically, without acid in your stomach (ppis cut acid levels by 90%) your body cannot breakdown and absorb certain nutrients. Some of the alternative medicine doctors even think that many of the people suffering from reflux don't have enough acid in their stomachs. The theory is that if you have low acidity levels then your body does not break down foods as easily and digestion takes longer. The longer you have that food in your stomach the higher the chance that you will have reflux. Also, the inefficient breakdown of the food produce gas, the gas increases pressure in your stomach and the pressure causes stomach discomfort.

Here is some info on prilosec and vitamin deficiencies, which for BFSer's should be taken note of:
Prilosec has been shown to reduce the absorption of vitamin B-12. In a study of young, healthy men, Prilosec reduced B-12 absorption considerably. 14 days of 20-mg Prilosec reduced B-12 absorption from 3.2% to 0.9%. 40-mg reduced it even more, from 3.4% to 0.4%. The researchers' conclusion: "Omeprazole [Prilosec] therapy acutely decrease cyanocobalamin [B-12] absorption in a dose-dependent manner."18-19 This is another special concern for the elderly, whose ability to absorb B-12 is already reduced.
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Re: BFS Diagnosis - Problem with Light Headedness

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