Does anyone else have this weird symptom?

[IDreamInColor]

This symptom is probably totally unrelated to the MC, but I thought I would toss it out there and see if anyone else has this problem.
For months now I've been getting this really weird feeling in my head. It's very hard to describe. It's not a dizzy, or a lightheaded feeling. It almost feels like maybe I took a shot of whiskey, only I don't drink, ever.
I have talked to my doctor about it, but she says it's because of my anxiety disorder, but I disagree. I've had anxiety disorder my whole life and have never had this symptom with it. I wish I could describe it better. I guess it kinda feels like your head would feel in the minutes prior to passing out. Sometimes it lasts for hours, sometimes for days. Then it will go away for a day or two and then come back.
I doubt it's MC related, but I'm clueless on what else it could be, and it's scary.

[natythingycolbery]

Do you mean you feel a bit dreamlike? If you do, yeah it is most likley to be anxiety related, I get it a lot usually only for minutes at a time. I've had anxiety disorder for most of my life too, but only had these feelings for a few months.

[hoosier1]

I get a feeling like that every now and then, but it feels more like a toxicity. I am thinking mine is related to a leaky gut syndrome. Tex, would you like to chime in on this?

[tex]

Looking back, I can recall that I had a few minor instances that were similar, when I was reacting, but they were usually quite mild, and short-lived - nothing that lasted for a long time, such as you describe.

Gluten crosses the blood/brain barrier, and it can cause all sorts of neurological symptoms, (though most GI docs and neurologists are unaware of this issue). For me, it caused migraines, and sometimes hallucinations, dizziness, and related symptoms. I would guess that you are describing a neurological symptom of gluten-sensitivity.

The effect you are describing is normally the result of low blood pressure, but the brain can perceive things incorrectly, in the presence of gluten or other neurotoxic agents. For example, before a migraine can occur, the blood pressure in the brain has to increase significantly, (why this happens in the first place, no one knows, but it sets the stage for what follows). The increased BP is normally not even noticed, since it doesn't cause any clinical symptoms. As the elevated pressure suddenly begins to collapse, though, (to return to a normal level), the brain incorrectly perceives this as an ischemic event, (a shortage of blood in circulation in the brain, which can/will result in the death of brain cells), and it orders the release of chemicals that alter the way that blood vessels respond to pressure changes, and these chemicals cause the auras that precede migraines, and they also cause the headache that follows the auras. IOW, migraines are the result of the pressure collapse, they are not due to the pressure increase, (at least not directly).

I'm not suggesting that's what is happening to you, I'm just saying that something similar may be causing your brain to misinterpret a signal, and to therefore issue instructions to alter blood flow parameters which could result in the sensations that you experience. This wouldn't necessarily be due to MC, though - it would be due to gluten sensitivity.

This is just my opinion, of course, and remember that I'm not a doctor.

Tex

[Linda in BC]

Funny you should mention this, Idreamincolour .... Two days ago, before I started the entocort (thank goodness or I would have thought it was that), I got out of my car and suddenly the world started spinning ... it was just like the room spins when you have had too much to drink and are laying in the dark trying to go to sleep only... I was wide awake, had not had any alcohol (I drink only about once a year at christmas and at that, only maybe) and my eyes were wide open. I could not focus on anything because what ever I looked at kept spinning away and I had to refocus on the centre of my vision again (only way to describe it.) It was not like the blackness or buzzing in your ears that you get before feinting. It only lasted for about a minute and half and then slowly receded. Scared me because i was in town and could not possibly have driven myself home like that. I carried on my merry way and have not had a reoccurrence. Very strange though (a drunk flashback ???? ). I have never experienced anything like it before in my life.
Does that sound anything like what you are talking about?

Linda

[IDreamInColor]

Linda, what you are describing sounds more like a vertigo. Mine is not a spinning at all, it's just a really weird feeling in my head, who knows.

Tex, neurological problem might be it, because I've also been experiencing a hard jerking in my legs, it's not a restless leg syndrome, it's different, it's a very hard jerk, about 6 in a row, and I also get that same weird feeling that I get in my head just prior to the jerks, then quits. I had no idea gluten crosses the brain and causes neurological symptoms, thank you for enlightening me about that.

[ant]

Dear Idreamincolor and Linda,

Very interesting this (at mild or more intense levels) should hit you now, because about a week ago I had a short, little vertigo attack and I am still having balance issue (which I am terrified might flip over into vertigo again).

A few years back I went through two or three years of balance issues (and intense fatigue) and was hospitalized for vertigo. This was eventually Dx labyrinthises. But I have always wondered if Gluten was/is a contributor to this?

Here is an extract from my "medical bio" which may (or may not!) be of interest:

1997 (43 yrs old)
I had been working in Asia for about 8 years and one day woke up with high fever, nausea and delirium. I though it was food poisoning. So I just rested and took a lot of fluids and simple food. After about two weeks (with no medication) I was back to normal, but with one problem: I had a bit of vertigo (not the fear of heights, but a sense of falling and lack of balance). So I saw a doctor and the blood test showed I had had Typhoid.

1997 – 2000 (43 to 46 years old)
The balance problem would not go away and night sweats continued, with a new problem of dry mouth, occasional ringing in the ears and feelings of tiredness and unease. Also, after a fall on my behind in a game football I developed an internal abscess near my rectum, which was treated with antibiotics 3 times over about two months before being conquered. Initially the antibiotics were oral and where not enough to knock it out. But the last treatment was a strong antibiotic cocktail administered intravenously over about three sessions. It worked and this avoided a hit or miss surgical procedure. (No fistula had developed). Although the abbess got sorted the other problems (balance etc.) did not easily resolve. After many test for diabetes, cancer markers, MRI scans etc. nothing wrong could be found. However, I gradually recovered and by 2000 was feeling that I had finally conquered what I imagined was the residue from my Typhoid……

2000 – 2003 (46 to 49 years old)
In summer 2000 I remember playing golf and saying to myself that finally I was fully back to health. That very day I had D, but thought nothing of it – thought I must have just eaten something bad. The next day I flew to meet friends on holiday. On the flight I had a 60 second full-on vertigo attack. I went on to my destination, but for the next week I had balance issues, night sweats and extreme thirst. A week later I was in hospital with another vertigo attack and anti-histamine drips. I was there for a week. I was eventually diagnoses was Labyrinthitis. It took about 3 years to get my balance fully back to normal.

So I went and saw the GP last week and she told me that there is a virus going around Hong Kong causing these balance/dizzy/vertigo symptoms. She has given my a homeopathy drug, Coccolus, and told me to get lots of rest. Perhaps this virus is more wide spread? And perhaps it affects us with MC/gluten intolerance/leaky gut more easily or intensely then others?

Best, Ant

[tex]

IDream,

Small muscle twitches are called fasciculations, but these are usually local. They are visible under the skin, but they don't result in the jerking movement of an entire limb. The only reason why I mention them is because inadequate magnesium intake can cause fasciculations, especially after a magnesium loss due to severe diarrhea.

Are both legs affected, or only one? Are you taking any dopamine blocking drugs, such as anti-nausea medications, (metoclopromide, promethazine, etc.), or major tranquilizers, (haloperidol, or respiridone, for example? They can cause such symptoms.

What is myoclonus?

Myoclonus describes a symptom and generally is not a diagnosis of a disease. It refers to sudden, involuntary jerking of a muscle or group of muscles. Myoclonic twitches or jerks usually are caused by sudden muscle contractions, called positive myoclonus, or by muscle relaxation, called negative myoclonus. Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. They may occur infrequently or many times each minute. Myoclonus sometimes occurs in response to an external event or when a person attempts to make a movement. The twitching cannot be controlled by the person experiencing it.

In its simplest form, myoclonus consists of a muscle twitch followed by relaxation. A hiccup is an example of this type of myoclonus. Other familiar examples of myoclonus are the jerks or "sleep starts" that some people experience while drifting off to sleep. These simple forms of myoclonus occur in normal, healthy persons and cause no difficulties. When more widespread, myoclonus may involve persistent, shock-like contractions in a group of muscles. In some cases, myoclonus begins in one region of the body and spreads to muscles in other areas. More severe cases of myoclonus can distort movement and severely limit a person's ability to eat, talk, or walk. These types of myoclonus may indicate an underlying disorder in the brain or nerves.

What are the causes of myoclonus?

Myoclonus may develop in response to infection, head or spinal cord injury, stroke, brain tumors, kidney or liver failure, lipid storage disease, chemical or drug poisoning, or other disorders. Prolonged oxygen deprivation to the brain, called hypoxia, may result in posthypoxic myoclonus. Myoclonus can occur by itself, but most often it is one of several symptoms associated with a wide variety of nervous system disorders. For example, myoclonic jerking may develop in patients with multiple sclerosis, Parkinson's disease, Alzheimer's disease, or Creutzfeldt-Jakob disease. Myoclonic jerks commonly occur in persons with epilepsy, a disorder in which the electrical activity in the brain becomes disordered leading to seizures.

http://www.ninds.nih.gov/disorders/myoc ... clonus.htm

Gluten is a neurotoxin, so it qualifies as a form of chemical poisoning in the brain. Note that gluten can cause Parkinson's-like symptoms. I was actually diagnosed with Parkinson's disease by a neurologist, but I later proved to another neurologist that I don't have the disease, so she officially "undiagnosed" me. Neither one of them, however, recognized gluten as a possible cause of my symptoms, (of course, neither one of them could explain the source of my symptoms, either. )

When I was reacting, if I didn't eat regularly, I had episodes of chronic hiccups that usually wouldn't stop, no matter what I did, (at least, the usual remedies wouldn't work). I sometimes had facial twitches, (like under or beside the eye, on one side of the face, only), but these didn't occur very often, and I suspect that they may have been caused by a magnesium deficiency. I still have occasional myoclonic jerks, or "sleep starts", when trying to fall asleep, but I think those are probably fairly common among "normal" people.

Tex

[JLH]

It was quite a while ago so I really don't remember it very well but I had a very weird feeling sitting in the car while DH was putting gas in the car. I thought maybe the fumes caused it but my doc said she thought it was a pinched nerve. Dunno......

[IDreamInColor]

Yep, both legs are affected, it's the strangest thing. It usually only happens when I'm relaxing. I can feel a strange sensation in my legs just prior to the jerk, and then they jerk, and I don't mean a little twitch, I'm talking big time jerk, like they lift themselves about an inch in a fast jerk.

[naoj]

I am 80 and was just diagnosed with microscopic colitis ... after the colonoscopy I went downhill for a week and ended in the hospital for low potassium and dehydration. After 2 days of fluid I was feeling better and starting to eat again potty free. then on the 3rd day it was back - everything i eat i have to potty and I cant walk very well at all and it takes so long to get to the potty that i am feeling hopeless again. I take apriso 4 pills every morning -- i t was 8 pills but i had terrible stomach cramps from the medication. any eating suggestions and how long will i be this way before the medicine heals this.

[tex]

Hi Naoj,

Welcome to our internet family. I'm sorry that you've got this disease, but hopefully we can offer some helpful suggestions to help you to get the symptoms under control. Many of us here control our symptoms by diet alone, by avoiding gluten, (wheat protein), casein, (milk protein), and about half of us have to avoid soy. Fiber makes the condition worse, so minimizing the amount of fiber in the diet is necessary. This means that it's necessary to avoid most fruits and some vegetables, and any vegetables that are eaten, should be peeled and well-cooked, (over-cooked). About the only fruit that is safe is bananas, which are a good source of protein. Some of us can eat applesauce, but since it contains fiber, be careful that you don't get too much of it.

Apriso may work, but it usually takes a while to take effect, and if you had to halve the dose because of an adverse reaction, it may not work for you. If I were in your position, I would ask my doctor for a prescription to Entocort EC. It is much more effective, and it will control the diarrhea much sooner. Many members here control their symptoms by taking Entocort, and by changing their diet to avoid the foods that cause problems.

Again, welcome aboard, and please feel free to ask any questions that come to mind.

Tex

[ant]

Dear Naoj,

from Hong Kong. I am sorry you have got MC, but you have come to the best place for help.

I agree with Tex about trying to get an Entocort Px. For me it was Entocort and a Gluten, Diary, Soy, legume and nightshade free diet (+ very limited fruit and sugar) that gradually healed my gut and stopped the chronic D. Took me a few weeks to see progress and a year to get off the meds. I will stay on the diet for ever, but am now increasing my fruit intake.

Best wishes and keep asking questions. We are all here to help each other, Ant

[tcorbett]

Dear Idreamincolor,

I think I know the sensation you are talking about in your head - I have some at times that feel like pressure on my head, but I get this floaty head feeling when I get up - like today, I was looking at some books in Borders and when I got ready to stand up, I had that feeling, so I stood up slowly and was fine. I always keep a water jug with me, I take a drink of water when I get those feelings, I also have some anxiety too, but I don't think it's that. I think it's similar to vasovagel. I am new to this site too - I am glad I found it. You may also want to have your potassium checked too - mine hangs low all the time, even though I take 30meq of potassium 3x a day. Low potassium can cause all kinds of weird symptoms, I get short of breath, tired, leg cramps, facial twitches etc. When I came off prednisone this summer - I was on 40mg/day - I would get these random cramps in my feet or hands that would distort my hand or foot, they were so painful and lasted several minutes, this was due to my potassium going wacky with the prednisone. I don't know if any of this helps. Feel free to contact me. Theresa in ME

[MBombardier]

WELCOMENaoj and TCorbett!! This is a wonderful forum. I have learned so much in the short time I have been here.

IDream, I have exactly the same jerking thing you do only it only happens once. It's so hard, I'd hate for it to come in a series like you have.

Naoj, I was on Apriso for 12 days. The main thing I noticed was it did nothing for the D, and gave me nausea from 3pm to 9pm daily. It also made me mean, but that could have just been a reaction to the diagnosis.

TCorbett, I don't know if you noticed a decrease in achiness when you were on prednisone--that's what I noticed when I was on it last year--but if you enjoyed that benefit of prednisone and you are like me, when you have been gluten-free for a few weeks you will note the same benefit. We are all different, but...

Welcome, y'all!