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Hm... Any Advise?


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16 replies to this topic

#1 Simona19

 
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Posted 30 January 2012 - 11:35 AM

I decided to post all my symptoms that I listed for my new neurologist that I recently visited at Columbia University Neurological Institute in New York. It sounds to him as autonomic dysfunction. I asked my regular doctor what this mean. She told me that this is very hard to diagnose and also very hard to find any medicine that will help. She told me that I will have with age stronger and stronger episodes- this is scary for me. I can't get it out from my head.

The list is long, but I hope somebody would have some advise for me.

1. When I eat something then I have this reaction: I will be very dizzy, like I drank 1 cup of very strong alcoholic drink. I would have a feeling like I will faint any second. I need to lay down, or sit down because I will faint.I will feel something like pressure with dull mild pain in back of my head where head is attached to spine and also on top of both sides of my head. I will feel like this for the all course of the episode.My limbs- arms and legs, would get very weak. I will be pale.Sometimes I would feel pain in middle of my chest, around hearth.I'm very weak and not able to move. I can't even hold my head up, even my neck is weak. I can't see nothing for 1-3 minutes from the beginning of episode. When I lay down, I'm able to see again after a wail, or I will exercise my feet and after 30-60 seconds I can feel "burst" of something and I will open my eyes.
Later I feel like I'm on sleeping pills. I will have strong palpitation. I will be dizzy- milder, my memory would be bad, my mind wouldn't work like it should. It's like I have Alzheimer: I can't think, my mind is blurred, I have problem with memory. If I will read, watch, or need to do something that require thinking, I'm not able to do that, I don't remember anything. I will turn and I don't know what people sad, did, I have brain fog. I can't drive my car, I can't function properly. I will just lay on couch, or sit in chair without movement.
I will be very, very cold. I will put sweater on and cover myself with blanket, but I would be cold for 30-90 minutes anyway. If I have a very strong episode, then I will have chills. I will wake up from asleep 1-2 hours later. I don't remember that I even wanted to fell asleep, but I will sleep very hard. I can't hear anything.

Time:This will happen right after any food or drink, and also 2-3 hours after (I would be only dizzy, feeling like I will faint, I will have palpitation, blurred vision, brain fog- memory problems, I need to lay down, I would be pale, very weak, and not able to move).
Every day is different. I will have two weeks with milder reactions (sometimes non), or two weeks when I will spent all day in bed, or on floor not able to even drink plain water.I will wake up in the morning and I know right away what kind of day I will have.If I have a bad day, then I don't feel hungry. I don't want to eat at all. I feel full even I didn't eat anything.
2. I will pee a lot for about 1- 2 days. My urine will be white like water. Usually a half of day every 15-30 minutes and then later every 1, or 2 hours. I won't drink anything and I will pee like this. I will have only 1 cup of water in the morning. After this, I will drink to hydrate. It's usually 2 days after my period, but not always(60-70 %). When I don't consume enough of salt, then this will happen any time, not just in the morning. This was the reason why my endocrinologist checked me for diabetes insipidus.I will eat salt (potato chips) to stop it, but I'm not able to do that. After this I know that I would have proximately 2-4 bad days. I will have stronger reaction to food, or just to plain water.
3. I always needed to lay down on the left side because on the right side I felt very nauseous, sick to my stomach. I needed to turn right away. I couldn't stand this feeling. Not so often anymore. Maybe because I'm not eating so often, or the portions are to small to cause a major problems.
4. Do I have both types of dumping syndrome- rapid and slow, or something that is mimicking this syndrome? Rapid because when I eat something bigger, than I will be dizzy right away, or sometimes even in middle my dinner. I can't move from the table to lay down. I feel like fainting, I'm dizzy- like very drunk, pale, I don't see nothing. I will just hold my head with both hands, or rest on table and wait for 5-10 minutes and then go lay down. I have this specially with cold, hot, sweet, or bigger dinner like: 1 ˝ cup rice, 1 chicken breast, 1 cup vegetable(fresh or cooked). The same feeling I will have, but much stronger about 1-3 hours later. When I will eat fruit then it will be in hour and when it is bigger food- lunch, dinner than 2,5-3 hours.
5. I tried to eat by the dumping diet, but I can't. I will feel the same way anyway and the reactions will last all day. In dumping diet you need to eat meat every time you eat. You need to eat just solid food and 1 hour later drink liquid. I tried this, but I felt much, much worse. My Gastroenterologist told me that I should try Prozac to slow down digestion. I asked my regular doctor and he told me that I shouldn't take Prozac. He gave me Victoza-injection for diabetes. I had only two. I had very bad days that time and I tried this, but I felt like I was dying. This medicine was forcing me to eat (my sugar was low, I had hypoglycemia from it, I ate fruit, sweets, meat, etc.) and I wasn't able to. My reactions were so strong that I spent two days mostly on carpet, on floor- not able to go to bathroom.
6. When I want to do something around house, I wouldn't eat, I'm afraid because I know up front that I will feel bad. I will have orthostatic hypotension when cleaning, but I can work somehow with it. I will take brakes, and work short time. During summer I tried to work in garden, but each time I had very bad orthostatic tachycardia, many blackouts, problem with breathing, strong palpitation, feeling faint (I sat on grass right away when I had that feeling and waited through),
During school year I needed to take my son to school. I ate just fruit- 1 box raspberries, blackberries, blueberries, or ˝ box strawberries in the morning, then around 10.30 am 1 ˝ cereal with l cup rice milk and later just more fruit- banana, ˝ orange, or crackers, pretzels, potato chips. Some days nothing until 3-4:00 PM because I had doctor's appointment, or I went shopping, etc, or I had episode in the morning just from plain water. Otherwise I would cause accident. Later I would eat dinner and small snack. I got sick, but I was home and safe.
7. Sometimes when I have day that I pee like crazy, I don't feel bad after food and I will feel hunger. I would eat something and after 2-3 minutes, I would be hungry again. I would pee every half hour and drink water ˝ - 1 cup every hour, and eat every ˝ hour something small because I don't want to over eat. I will actually feel like my food would disappear from stomach.
8. 1-2 weeks from a month I will have very, very low blood pressure for me. I will eat salt, drink water, but the BP would drop after 1 hour or two anyway. Many times I'm not able to get my measurement of BP. My machine would just count and count and nothing will be on the monitor, or I will get error. Same thing always happens in the hospital, on their monitors. After little movement, I will have something like this 102-52-65. Later I will have 118-68-72, or more like 126-78-85.I need to eat a lot of salt for 2-3 days and only then I would feel better. I would have problem with food, but I'm better.
When I have this low blood pressure, then I will fall asleep very fast. I would go pee, I would be very weak, not able to move, very dizzy, lightheaded, I will have very strong palpitation with movement, I would be cold and have very cold hands and feet. When I fall asleep, I can't woke up. I would try to sit, but I would fall back down and sleep more. Sometimes even 3 hours. (This is very strange for me because I don't sleep during day, I never sleep during day, until now).
9. When I feel ok, I want to clean house, or work in garden, but I can't. I will have orthostatic hypotension. I will start to work- cleaning floor with paper towel. After about 5 minutes, when I will stand up because I need to change the area, then I will feel like I will faint any second. I will have very strong feeling even in my stomach. I feel like I'm in the very fast elevator that will stop harshly and your stomach feels weird. When I stand up, I don't see nothing, I have that feeling in stomach that I will faint, I'm very lightheaded, not able to move. I need to just go right down. I will sit on the floor, or just squad and wait when it will pass and I will be able to move again. I will be very pale, but I will work anyway because the job need to be finished. I will have about 4-7 episodes before I will give up and lay down for about 30 minutes. It depends on the strength of them. I will have very strong palpitation with movement, problem with breathing- hard to bread, like somebody is sitting on my chest. Sometime it feels like there isn't any oxygen in the air.
10. I also have problem with walking up to steps. We have 17 steps in the house. When I go up to step faster then on top, about 14-15 step, I will have black out again. I don't see nothing, I will have strong palpitation, problem with breathing , I don't have oxygen, I'm very weak, not able to move, I will just stand and hold on to the railing. When I can, I will move and lay down on sofa for about 20 minutes and I will wait when the palpitation will go down. Not every time when I'm going up to steps.
11. When I have a very bad day, I will have also strong palpitation. Sometimes I can't sleep because I can hear my hearth beat in my head. I realized that my hearth would skip beats. Every 12-14 beats, sometimes even after 4th beat. My hearth would stop for l beat and later would beat twice very fast. It can happen in every minute, or after 2-3 minutes again.
12. When I have smaller BP and I will eat something, I will feel like my heart will drop suddenly down, or something. It feels like spasm with mild pain. Ones I was measuring BP and it happened. It was very sudden drop in blood pressure for 5 seconds about 10 points. Later my blood pressure came right back up. I checked my BP again right away and it was normal. The feeling is very strange, very strange and uncomfortable.
13. I have Acid reflux. The acid isn't coming to my esophagus, but to my throat. In night I will woke up on feeling that I don't have air, I can't breath and I will start to choke and cough. Sometime even 4-5 times per night. I don't know if this is acid related, or I have sleep apnea.
14. I tried to get of Nexium, but I wasn't able to do that. I will skip pill in the morning and by the afternoon I will feel the burn. Sometimes in the morning when I ate cinnamon cereal, or cinnamon bread I had burning right away. If I don't eat nothing that can elevate acid, I can make about 2 days with the help of TUMS, but the third day I can't stand the pain. I can even feel how the acid travel to my throat-awful feeling. Specially after endoscopy. I can't sleep, the acid is always in my throat.
15. I will have migraine, mostly before, or after period (60-70%). A few of them were with aura- visual disturbance. I will stop to see on one eye, or both. I don't see nothing with one eye completely and with other I will see like through hot air. When I close my eyes I will see sparkly waves instead of dark. After that I will have excruciating migraine headache.
16. I have allergies to: all nuts, kiwi, honey, milk casein and orange aroma. I have mouth allergy to pineapple, cantaloupe, black pepper. Not able to eat gluten- celiac disease.I'm fructose and lactose intolerant. I also have major problem with vegetables like broccoli, cauliflower, beans, etc. Even any cooked vegetable. I will have same pain, cramp, not able to pass gas, etc. I never reacted so badly to food. Suddenly I can't eat fruit and vegetables, legumes, etc. I'm very sensitive. Before I was "ok", but now?
17. My doctor told me that my veins doesn't constrict a fast enough with changing of positions and they don't get the blood to my head. This can be the reason for my dizziness. Can this be also the reason for problem with digestion and control of digestive enzymes?
18. I'm craving salt like crazy. I can't stop eating potato chips. I will eat them until my mouth will burn and only then I will have enough for the moment. I don't feel that they are salty enough. My peeing will stop, and I would feel better, but my reaction to food- dizziness, etc. would be stronger.
19. When I have any test that requires to fast or stop drinking for many hours. I will have very hard time to get back to my "normal" day. I would spend all day on sofa, or in bed, I will have very strong palpitation with movement. I would be dizzy even after 1 cup of water. I would pee a lot. I would be very weak, pale, cold. I would have same feeling like always, but multiplied by 3. After about 3 days everything would go back to my "normal".

***** My Theories, Questions for doctor:******

1. I think that I might have postprandial hypotension because my blood pressure will drop 10-20 points on systolic and 7-12 on diastolic pressure. This sudden drop and is to low for me.
2. I think that my intestines might absorb to much blood, or water from my system to digest food. I don't know why. If not, why do I feel this process? Can it be stopped?
3.Can all this be related to problem with parasympathetic nervous system? Why? I don't have problem with the type of food that I'm eating, but with the digestion of food. I will eat the same thing every day at the same hour for 3-4 days without problem and next day I will have a very bad episode again. Even water will cause the reaction.
4. Parasympathetic system is triggered by food. Do I have miscommunication between stomach, hearth and brain? Instead of elevating blood pressure for digestion my system would lower it. What if I have some rare neurological issue that can mimic dumping syndrome, cause orthostatic hypotension, or POTS, sudden drop in blood pressure after eating, frequent urination and muscle twitches?
5. What if when I eat something, everything is going very fast to my small intestine (dumping syndrome). My intestines don't know what to do with the undigested food and they are absorbing water, or blood from my body because they need to digest everything instead of stomach? Can this be a reason for orthostatic hypotension and frequent urination?
6. What can cause sudden drop in blood pressure?
7. Can lower magnesium and B12 levels be a cause of my neurological issues?
8. If I have only dumping syndrome, and everything that I eat would go very quickly out from my stomach, including my digestive juices, can this cause low stomach acid and that is why I have problem with digestion and dizziness?
9. Why I'm craving salt all the time? I will eat it until my mouth burns. Do I need salt for stomach issues, or for blood pressure?
10. Can all this be just the result from bad contraction of veins and bad circulation of blood?
11. Can I have something wrong with my back- pinched nerve, or narrow spinal cord and that can be the reason for all this? Why? I started to go to chiropractor. He did the x-ray of the spine and told me that I have problem with first and second vertebra on the left side where my head is attached to my spine. When he will adjust my neck, I would feel a very big flow going into my head. I would see better, hear better, my mind would be clear, I would feel fresh, like I just woke up after good night sleep. When I will have my neck adjusted after food, the reaction is a very, very big. I feel very good. I don't want to move. If I will go there on empty stomach, I will have a small reaction, but it's there. And another thing is. When I have a bad day, my muscles are very tight, nothing is cracking. When I feel good, and I'm not very sick after food, my spine is cracking with loud noise. Is this somehow relevant, or I'm just reacting because I have a very big problem somewhere and this is helping me to jumpstart my nervous system?
12. If I have some type of autonomic dysfunction, can it be stopped? How long it will last? I know the answer to that- forever
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#2 Simona19

 
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Posted 30 January 2012 - 12:05 PM

I would like to add this:

http://www.healthy-h...e-symptoms.html
Check the video on the bottom of this. This is me, but my reactions are around 50-60% from hers on a very bad day. Thank God!

http://www.dinet.org/symptoms.htm 70% from this list I have.

I don't know what to think, what to do with all this.

POTS is treatable, dysfunction is not.
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#3 Bubba's Mom

 
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Posted 30 January 2012 - 02:11 PM

Oh sweetie..it sounds like you are having such a rough time. :(
From the site you linked it seems like you fit the description? What is your Dr. telling you? If your Dr. can't help you..maybe you should see if you can get a referral to someone else or one of the major health centers like Mayo or Cleveland Clinic if you're in the US?
If you're not in the US, surely there must be somewhere you can go for more help?
(((hugs)))
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#4 Simona19

 
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Posted 30 January 2012 - 02:51 PM

Oh sweetie..it sounds like you are having such a rough time. :(
From the site you linked it seems like you fit the description? What is your Dr. telling you? If your Dr. can't help you..maybe you should see if you can get a referral to someone else or one of the major health centers like Mayo or Cleveland Clinic if you're in the US?
If you're not in the US, surely there must be somewhere you can go for more help?
(((hugs)))

I live in New Jersey, in the USA. After two years now I finally found a doctor that understood my symptoms, didn't offered Prozac just to get me out of his office like others did.He is a director at the Neurological institute in Presbyterian Columbia University Hospital in New York.

I saw many doctors, I had many tests and excessive, even repeated blood work for many things that I never heard of. Almost everything came back negative which prone doctors to dismiss me.

Only one doctor believed that I was sick. He saw me for 3 years before prior this and he knew that I was sick. He tried to do his best. He went even beyond his expertise (ordered tests that he shouldn't order). He sent me to a neurologist , but he wasn't able to diagnose me because everything was coming out negative.

I made video from my episodes and showed to him. Only then he believed that what I'm telling him is real.

He suspected POTS, but told me that if I have it, he can't help me.

When I called to find out the results from ambulatory EEG, he told me that he told about me to his co-workers and they think that I should see the Doctor Weimer at Columbia.

I waited for the appointment 2 and half months.

He gave me pills- Mestinon. This medicine is listed as one of the pills that people should take for POTS.

All this happened after virus infection in February 2010 and from that time I got much worse. But when I have a great day, I will bake and cook and try to convert gluten recipes to non-gluten ones.

Thank you so much for your suggestion. I was just overwhelmed with all this, specially part that I will get even stronger episodes with age. I'm just 36 and I feel like old grandma already.
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#5 Skylark

 
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Posted 30 January 2012 - 02:53 PM

Ugh. That sounds awful.

Your post is a bit of an information overload for me. :huh:

Here is a bit on salt craving. Addison's is mentioned.
http://www.mayoclini...craving/AN01597

This is an Addison's symptom list. Some match. Addison's would mess up your autonomic nervous system pretty thoroughly.
http://www.ncbi.nlm....lth/PMH0001416/

My acupuncturist was telling me last week that in Ayurveda you are supposed to lean or lie to the left after eating. It puts the right nostril higher so you breathe through it which is good for digestion. Weird, huh?
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#6 alevoy18

 
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Posted 31 January 2012 - 06:48 AM

Hi,

I'm really sorry to hear you are struggling right now and I hope it gets better for you. I just wanted to let you know that I had orthostatic hypotension, salt craving, palpatations and autonomic dysfunction. I had to have a pacemaker put in because my heart would slow down inappropriately too much. I also suffered from weakness and had trouble with stairs, walking far or exercising. Then in one month I started to lose weight fast. At first they blamed Celiac Disease until I started getting worse, even after going gluten free. It all turned out to be Addison's Disease. If I were you, I would ask your doctor to test AM Cortisol and ACTH or ask for the ACTH Stim test. I'm not saying that is what you have, but it sounds similar to my story and it could be related to your adrenal glands. It is better to be safe than sorry. I wish you the best!!!
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#7 Simona19

 
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Posted 31 January 2012 - 10:24 AM

Hi,

I'm really sorry to hear you are struggling right now and I hope it gets better for you. I just wanted to let you know that I had orthostatic hypotension, salt craving, palpatations and autonomic dysfunction. I had to have a pacemaker put in because my heart would slow down inappropriately too much. I also suffered from weakness and had trouble with stairs, walking far or exercising. Then in one month I started to lose weight fast. At first they blamed Celiac Disease until I started getting worse, even after going gluten free. It all turned out to be Addison's Disease. If I were you, I would ask your doctor to test AM Cortisol and ACTH or ask for the ACTH Stim test. I'm not saying that is what you have, but it sounds similar to my story and it could be related to your adrenal glands. It is better to be safe than sorry. I wish you the best!!!


Sometimes I feel like I have the Addison, but the eating- digestion doesn't fit the profile. I don't know.

I didn't want to post all my problems, but I'm happy that I did.

My endocrinologist tested only Aldolase serum, renin activity- normal. Then he ordered urine test for osmotality- came back low and urin sodium which came back high, or higher. He tested me for diabetes insipidus. I had water deprivation test. http://renalfellow.b...ation-test.html It was normal.

This is what happened afterwards:

****I had Water deprivation test. Nobody were able to tell me, if I can drink water before the test. I didn't drink nothing from 10 pm until 2 pm the next day.In the hospital nurse took from me 18 tubes of blood and I pee every hour, or 45 minutes. I felt dehydrated, dizzy when living the hospital. After I got home, I drank water, Gatorade, and currant juice. I ate l empanada for dinner and before l egg, 1 hot-dog and l slice of bread.I spent all day in bed. I was very weak, dizzy, feeling like I will faint any second, I had palpitation, specially with movement( just bathroom visits), not able to stand, very, very weak, tired, feeling like on flu.

Next day was the same thing. Not able to even drink any water, or eat anything. Feeling pressure on my chest and have feeling like my hearth was working very hard, like somebody was sitting on it. I was not able to move, a few steps were causing blackouts and fainting feeling. In the evening my family forced me to go to the ER. They took another 3 tubes of blood. Everything was perfect. I had only low blood pressure 102-52-60, but not emergency low. They gave me one bag of fluid and I felt better, fresh. I had muscle spasm on right side between breast for 14 hours when I got home. I felt it over night, I wasn't able to sleep. It always woke me up.

For the three days everything was the same, until Saturday- the last day that I was very sick. I didn't eat nothing for 5-6 hours, I just drank some water because I needed to take my son to school. I craved salt in huge amounts. I needed salt. I didn't pee so much during these days, but Sunday, Monday, and Tuesday I pee all day, every 15, 30 minutes, or every hour. I also had palpitation many times and I felt my hearth to skip hearth beat and then beat twice very quickly.
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#8 Simona19

 
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Posted 31 January 2012 - 10:47 AM

Ugh. That sounds awful.

Your post is a bit of an information overload for me. :huh:

Here is a bit on salt craving. Addison's is mentioned.
http://www.mayoclini...craving/AN01597

This is an Addison's symptom list. Some match. Addison's would mess up your autonomic nervous system pretty thoroughly.
http://www.ncbi.nlm....lth/PMH0001416/

My acupuncturist was telling me last week that in Ayurveda you are supposed to lean or lie to the left after eating. It puts the right nostril higher so you breathe through it which is good for digestion. Weird, huh?


I apologize for the size of my story. It is just 1/3 from 12 pages that I gave to my new neurologist. The list of doctors tests, findings and appointments is missing.

Here is the short version:

Blood for: diabetes- two hours test, normal glucose, hypoglycemia, hyperthyroidism, hypothyroidism, pancreatic hormones, Giuliani-Bare syndrome, Lyme disease (checked 4 times), Lupus- many types, B12- pernicious anemia, hepatitis a,b,c , Addison disease- endocrinologist told me that I don‘t have it, but he never tested me for ACTH, or morning cortisol, adrenal glands, hypothalamus- hormones, pituitary glands.

They also looked for: tumors, cancer, diabetes insipidus, muscles problems, abnormalities in hearth, intestines, or stomach, circulation of blood in the veins in my neck, vitamin deficiencies (Only Vitamin D, magnesium, iron, but got up on supplements)…..

The results are negative.

I had: 3xMRI with contrast, 2xCT one with contrast, EEG, Ambulatory EEG, EMG, Doppler for veins in neck, 2xEndoscopy, colonoscopy, 2xholter, stress test, ECHO, 2x upper GI series, HIDA scan, test for SIBO and fructose intolerance, Valsava test for autonomic nervous system, and 2xTilt table test ( second time positive for POTS- they wrote most likely POTS in the final report) …..

The results are in most cases negative for my symptoms.

Can you ask your acupuncturist, if you can fix imbalance between parasympathetic and sympathetic nervous system with acupuncture?

Thank you so much for your suggestions. Now I’m thinking what if I have Addison instead of POTS and autonomic dysfunction. Addison is very dangerous, it can be also deadly, if not treated. I need to do something about it.

Thank you guys.


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#9 Bubba's Mom

 
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Posted 31 January 2012 - 01:31 PM

I still say..see if you can get a referral to Mayo Clinic. They accept most insurances. It couldn't hurt to look into it?
It's really hard when your tests aren't absolutely definate one way or the other. So many of us here have been misdiagnosed for other things over the years. Many of us get frustrated and it seems like the Dr.s don't belive us?
It's good that you filmed your reaction so they could see what's happening.

Maybe you have more than one thing with overlapping symptoms going on?
I hope they can find some answers for you and you can get feeling better. You're really having a tough time. Don't give up!
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#10 Skylark

 
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Posted 31 January 2012 - 02:10 PM

Addison's should not be too hard to rule out.

I'll ask my acupuncturist about autonomic nervous system balancing for you next time I see her.
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#11 Simona19

 
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Posted 01 February 2012 - 11:29 AM

Addison's should not be too hard to rule out.

I'll ask my acupuncturist about autonomic nervous system balancing for you next time I see her.

Thank you. I got use to live like this, but sometime I will get angry at the situation and I'm trying to look for the answers. Like now.
I turned to you for help.
Thanks again.
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#12 Aly1

 
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Posted 01 February 2012 - 06:38 PM

Thank you. I got use to live like this, but sometime I will get angry at the situation and I'm trying to look for the answers. Like now.
I turned to you for help.
Thanks again.


Don't ever settle with this illness or "get used to living like this" - you are fighting for your life literally, don't ever give up!
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#13 RollingAlong

 
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Posted 02 February 2012 - 02:11 PM

You may want to check out this book

Bernstein Diabetes Book

Or consider asking a question on the Bernstein Diabetes Forum. I am not saying that you are diabetic or that this is a blood sugar problem; I just think there's info on that issue in the book and on the forum that may be helpful to you.

an overview of causes:
http://www.dinet.org...causes_pots.htm

Another possible source of info for you is the Pituitary Network Association. Pituitary issues are surprisingly common and can have a wide variety of effects, such as Addison's. These tumors are benign, but difficult to diagnose.

http://www.pituitary...c_hormonal.aspx

Best wishes, and please keep us posted.
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#14 Simona19

 
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Posted 03 February 2012 - 06:59 AM

Don't ever settle with this illness or "get used to living like this" - you are fighting for your life literally, don't ever give up!


After many doctors visits when doctors looked at me like I was looking for illness, or attention from my family, when they tried to give me antidepressants for my "anxiety", I gave up. It happened for the past two years many times already. One doctor ordered blood work for celiac disease that came back negative after 3 months on gluten-free diet. He also checked pancreatic enzymes- negative too. I told him that nothing changed and that I still have major problems with food. He listened me, smiled, rolled his eyes and told me: "Try to eat everything and come back in a month." For what? He didn't even mentioned fructose intolerance, SIBO, food intolerances or allergies. I wasted $300,-- on this?

Or other gastroenterologist prescribed medicine for relieving gas and right away Prozac. When I was leaving, he handed me the prescriptions (out of blue) and told me twice: "Take the Prozac!"

Hmm… I scored again.

Even my neurologist was puzzled because everything was coming back negative, or perfect. Then I saw this: http://www.healthy-h...e-symptoms.html video on the bottom of this page.

I saw myself in it. It gave me the idea to make similar video from my episodes. I showed them to my neurologist and only then he had some idea what I might have. He wanted me to have another Tilt table test. I had one already, but it was short- only 15 minutes, I had one reaction right at the beginning, but they discarded it because they aren't taking first 2 minutes into consideration. I even called nurse that did the test and complained about the report that she sent to my doctor. It was waste of time.

Then 6 months later I had second tilt table test which was 50 minutes long and I had about 10 reactions, 5 strong and 1 very, very strong. The doctors after consultation decided that all my symptoms looks most likely like POTS.

When I saw somebody that dismissed me without any help because he/she didn't knew what I'm talking about, I gave up. I got use to by now to live like this because it's two years now. I know what to do, when to do it, when can I eat, or drink and what. It's like one old saying: When life give you lemons, make it lemonade.

When I have very bad weeks, or months, then I will look for a cure like crazy. I will make appointment with another doctor, or try they suggestions, or like now I posted all my symptoms online to ask you guys for help
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#15 Simona19

 
Simona19

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Posted 03 February 2012 - 07:35 AM

You may want to check out this book

Bernstein Diabetes Book

Or consider asking a question on the Bernstein Diabetes Forum. I am not saying that you are diabetic or that this is a blood sugar problem; I just think there's info on that issue in the book and on the forum that may be helpful to you.

an overview of causes:
http://www.dinet.org...causes_pots.htm

Another possible source of info for you is the Pituitary Network Association. Pituitary issues are surprisingly common and can have a wide variety of effects, such as Addison's. These tumors are benign, but difficult to diagnose.

http://www.pituitary...c_hormonal.aspx

Best wishes, and please keep us posted.

Just the first page explains different things that you can have from diabetes, or not- autonomic dysfunction. Thanks for your suggestion.

I got funny story about the second page. I had second tilt table test and the cardiologist who ordered this test thinks that I have POTS. I showed him the printed version from Causes of POTS with marks what was checked already and was negative. He asked me: "Who gave you this? You shouldn't look at some stupid papers. Here, take this. That is what you need to read. "

I took the papers that he gave me, put it into my folder and came home. When I checked what he gave me, I got nice surprise. He gave me the printed version from the same web-page. It was overview + what helps. HUH…?

When I'm sick, and I need to lay down again, after first 5-10 minutes I will be "okay" (still laying down) and I will look online for things that can cause my symptoms. I tried to ask questions different ways, like regular people- dizziness after food, or I used doctor language- postprandial hypotension to find cure.

The third suggestion: I have question: Wouldn't be these pituitary tumors visible on MRIs, or Cts with contrast? If they are hard to find, is there any other test to see, if you have them? I hope, I don't have it.
Thank you again.
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