Can anyone tell me if these styptoms are part of my condition?

Hi, I have not posted for some time. I have recently had a bad patch and been on a course of Tiberal to try clear out bacteria.
I am currently experiencing syptoms of dizziness, almost feels like I contantly want to balck out- like a short circuit in my bran. Also headaches, and global muscle tightness- especially behind by small intestine where I have very low ganlion cells and slow emptying. I usually massgae that area every day to help food through- but its as though my brain is involved here- and cant get miscles to kove. Also have nausea. Also- very weak and wobbly.
I am not really understanding my gut condition well- but always feel its a neuro problem. I have had these dizzy spells etc before and always no one can find anything but low blood pressure. Its quite scary. As you may see i'm rambling and thats all part of it when i get like this- very 'weird' fuzzy feeling like my brain is in and out of 'normal' Can anyone relate to this? I dont want to go to hospital again only for them to say its a virus. I know its not.

By philsphan09
Posted June 28, 2009 at 8:59 pm
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Yes, I can relate to it. I have something called autonomic dysfunction, it's sort of a glitch between the brain and the heart beat. My heartrate drops suddenly and I pass out or become close to passing out. My heart is fine otherwise, no disease present. I see a cardiologist for it, but I believe a neuro dr might be able to help you too. There are a couple different kinds of autonomic dysfunction, google it and you will find some info. Also, your dizziness may be from low blood sugar. Good luck. Take it easy and slow with yourself. Don't push yourself.

michelle

By Heatherstl
Posted June 29, 2009 at 9:42 am
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Hi, I was diagnosed with gastroparesis Dec. 2008. I am not diabetic, so the cause was idiopathic. However, the gastroparesis was severe (I was and still am on mostly liquids only) and I was afraid that this was only the beginning of something progressive.

Indeed, April 15, 2009 I suddenly became severely disabled (and remain so) due to autonomic dysfunction which now explains the gastroparesis as well. Though not yet diagnosed (I may have to go to John Hopkins), my dysfunction is consistent with Chronic Fatigue Syndrome (CFS). CFS symptoms can vary but often include muscle pain, cognitive brain fog, and 'fatigue' upon exertion. It is a neurological disorder, as well as an immune and endocrine disorder. In my case, I suffer mostly from orthostatic intolerance....the faintness, dizziness, weakness, heart palpitations, shortness of breath when sitting up or standing too long (which at times is only a matter of seconds). It is thought the OI is caused in part by hypovolemia and dysautonomia of the ability of the vessels to constrict. I also suffer from sudden hypoglycemia as a major symptom. I wear constriction stockings and liposuction garments to keep as much blood up by the heart and prevent leg pooling as much possible.

More information about CFS can be found at the CDC website:

http://www.cdc.gov/cfs/awareness.htm

Information about autonomic dysfunction can be found at: www.dinet.org.

I have found many YouTube videos on the subject to be validating. Many OI ANS dysautonmia's have similar symptoms. Though I don't think I have POTS, a particular type of orthostatic autonomic dysfunction, I sure can relate to those who do. An entertaining and enlightening POTS video is:

http://www.youtube.com/watch?v=o5D9T04OVZg&feature=related

I am sorry for the bad news...gastroparesis as only a 1st symptom to many more disabling issues to come...which is not the case for all who have GP, but is the case for some, including myself. But better to know sooner than later so you can begin getting the help you need for ALL of your symptoms, not just the GP.

Good luck and my prayers to all who face a similar situation,
Heather

By JoAllison
Posted June 29, 2009 at 9:03 pm
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You might have the doctors check you for vaso-vagal nerve syncopy. It's when the vagus nerve in your brain forgets to tell your heart to beat (the same nerve that's causing the GP problems). My Dad has the vaso-vagal nerve syncopy and had symptoms something like you're describing at the beginning, before it got worse & he started keeling over, flat-lining for multiple seconds. He now has a pace maker . It probably isn't that - it's rare - but have it checked, in case.

By Novagrad
Posted June 30, 2009 at 6:21 pm
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Camea:

I have autonomic neuropathy which is felt to be the cause of my GP and colonic inertia. I also get dizzy, imbalanced, brain fog, and blood pressure and heart rate abnormalities with this. I also have trouble urinating due to the neuropathy. Your case sounds similar. Have you had any autonomic testing?

Mimi

By Camea
Posted June 30, 2009 at 7:38 pm
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Thanks so much to all of you for responding- this is a big help. I am only just out of bed today and able to get up without feeling like I'll drop. Mimi how do I get autonomic testing?

By Novagrad
Posted June 30, 2009 at 7:42 pm
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Hi Camea:

I'm not sure where you would go in NZ (I loved my visit there in 2001, by the way!), but I had testing done at Mayo Clinic which confirmed autonomic neuropathy. Your own doctor could even do some testing just in the office, like testing your blood pressure and heart rate in lying, sitting, and standing positions. Your heart rate would increase by more than 30 beats from a lying to a standing position and your blood pressure would go down significantly upon standing. Good luck. Though there is formal testing for autonomic neuropathy, I think many doctors can assume the diagnosis based on symptoms and the testing I mentioned above.

Mimi

By Camea
Posted June 30, 2009 at 7:42 pm
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Heather this is all such a help. My husband is an amulance officer vultary- studying to become a paramedic- so he has been able to check all these links out for me. I think we may finally work out what my problem is. He says he doesnt think its POTS, because my heart rate never goes fast. eveything is always slow or low (BP, heart rate, blood sugar). I will post more when i feel better, thanks everyone- keep writing with any tips. I have got a permanant headache but 2 days in bed and i seem to have lost the dizziness- well only been up 1 hour and no dizzy spell yet just week and foggy and headache and nausea- but not like I'm going to faint yet- think it may come back though! Just eating a small amount of soft food- not going down much at all. Thanks again.

By Camea
Posted June 30, 2009 at 7:46 pm
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Thanks Mimi, well that sure sounds like me- my husband worked that out with home med kit. We will go check out info on autonomic neuropathy. BTW is this your dog on the photo? My daughter wants one like this but long haired so she tells me? So gorgeous.

By Camea
Posted July 1, 2009 at 9:18 pm
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Shes so lovely! Mimi when you got tested how did they define it was autonomic heuropathy? What were the tests? I'm not sure what the Mayo clinic is? My GP just told me to go home to bed and come back next week if it is still bad.Think I need a new doc

By Novagrad
Posted July 2, 2009 at 7:37 pm
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Hi Camea:

I went to the Mayo Clinic in the summer of 2007. It's a large hospital system and I went to the main branch which is in Rochester, Minnesota. They do a lot of studies and are considered the #1 hospital in GI problems (as well as in other areas). They are well-equipped and used to having patients from other states and countries. When I went there they set up 2 weeks of testing. I had tilt-table testing, a sweat test, and a urine test as well as a comprehensive neurological exam to test for autonomic neuropathy. I also had multiple GI tests. They are extremely professional and kind there. It can be very expensive, though. My insurance paid for what they thought was reasonable and then I paid for the rest (which was enormous). But, I had been in the hospital for 10 weeks before I went to Mayo as well as many times the year before. I was diagnosed based on symptoms the year before I went to Mayo and I actually received a course of IVIG. I would have been maintained on IVIG but had multiple side effects from it which were too severe to continue it. Good luck!

Mimi

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