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New Guy In Need Of Help


Apache
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Hi everybody. I'm new here and I need some help and advice. I'm pretty sure I have some form of dysautonomia, but there isn't a doctor nearby that seems to no much about it. A little over a year ago my neurologist referred me to a cardiologist for a tilt table test. The cardiologist didn't seem to understand why I needed the test. I explained to her that my neurologist suspected that I may have dysautonomia, but she didn't seem to understand what that is. She decided to just check my blood pressure in the exam room. Starting in a lying position it was low. It then dropped when I sat up, and dropped again when I stood up. I don't remember that numbers, but she didn't seem to concerned about it and only told me to increase my salt intake. Since then I have stopped getting lighthead upon standing, but I still have a lot of other symptoms happening that I don't understand. Let me give some history and hopefully somebody can offer some advice.

About two years ago, after several years of extreme stress and anxiety, I began to experience some really odd things. My mind began to get so foggy that I was becoming detached from everything. Everything looked distant and lights seemed like they were always too bright. I was getting extremely dizzy and would have bad feelings of pressure in my head and jaw. It often felt like there was a weight inside my head that was pushing my brain to one side or even downward. I began experiencing increased digestive issues along with ones that I already had. Eating would make all of these things even worse. Sometimes after eating I become very panicky and overly stimulated by too much noise. Everything can have a dreamy look to it. One doctor wanted me start checking my blood sugar, and what I noticed was that often during these dizzy/head pressure episodes my blood will become so watery that I can't get it on the test strip. Recently when I had one of these episodes my gums began bleeding badly. It seemed that perhaps my blood volume got so low that it was able to seep through my gums. I was spitting blood for about five minutes. Then the dizziness stopped and so did the bleeding. I brushed my teeth a few minutes later and there was no more blood. Another thing that happens, and this is usually after I eat, is that my legs feel weak and wobbly. Not shaky, but just weak. I'm extremely sensitive to medications and if I take any kind of supplement-vitamin, mineral, herb, probiotic-I become really spaced out and feel like my brain is being sucked downward. It is an undescribable misery that will last through the entire day and sometimes the next day. This happens even if it's only a tiny granule from a vitamin capsule or a single drop of an herbal tea.

Back in 1988 I had surgery to remove part of my pancreas. It had grown too large and wrapped itself around my small intestine. They also removed a couple of inches of small intestine where it meets the stomache, and removed part of my stomache is it was totally ulcerated my the digestive acid not being able empty from my stomache. After the surgery I noticed that my heart seemed to beat a little harder and faster, and I was getting heart palpatations. I was also getting lightheaded frequently. I mention this as it may be some clue to somebody that knows more about AD than I do.

I've seen all kinds of doctors and had all kinds of tests. My gastrologist came up with nothing, and MRI on my head came back clear. So did an abdominal CT scan, a complete ultrasound, and an echocardiogram. Blood test always come back normal. B12 is low but within normal range.

I don't know where to turn. Sometimes I feel like I'm getting better and sometimes I don't. The weird reaction I have to supplements is alarming, but nobody seems to have any idea what it could mean.

If anybody could offer some advice or suggestions I would really appreciate it. Thank you.

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Apache

I'm so sorry to hear that you have been so unwell, and that it has been so difficult to find medical help. A lot of us experience the same weird symptoms that you report - if you search the site, you'll find many relevant threads (including threads about intolerance to medications etc).

Diagnosis is important, and it can be really frustrating trying to find a doctor who is familiar enough with dysautonomia to make an assessment. The DINET website carries a list of doctors others have found helpful - make sure you have a look to see whether any of them are practicing in your area. It is a good sign that your GP was willing to refer you for assessment - many of us have needed to see more than one cardiologist/neurologist in order to find a dysautonomia-aware doctor.

It is common among dysautonomia patients to have many investigations that return a 'normal' result - a lot of doctors don't know what to look for. In my experience, even the oddest symptoms can be explained.

Take heart. You've shown extraordinary resiliance and persistance in getting yourself to this point - you may be feeling dispirited, but you might be closer to the answer than you think.

Good luck with finding a dysautonomia-aware doctor - I hope that the DINET website can point you in the right direction.

With best wishes

Dianne

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Hi and welcome-

You have probably figured out that the reason you are dizzy and lightheaded after eating is probably because your available blood is being used by the stomach to digest and therefore your brain is somewhat deprived. Small meals should help somewhat.

Upping your salt is not a bad first step but since the cardio did not know what you were talking about looking for another one is a good idea. If you don't actually pass out many docs won't consider it serious enough.

Are you under the care of an endocrinologist? That route has been beneficial for some members.

You are complicated as are many cases here. Many of us endure the horrible brain MIA (missing in action) - no ability to think which when you try to describe it to MDs can often sound like ordinary forgetfulness due to stress. Extreme fatigue is a problem for most of us - no ability to take daily showers, e.g.

Hopefully just knowing you are not alone helps.

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I did go to an endocrinologist, but she didn't know what to do for me based on my symptoms. She just wanted to send me for the typical blood work. I didn't even bother having it done. Can you tell me what an endocinologist may look for? I'm pretty sure I have some hormones that are out of whack. I took one of those adrenal index tests that you do at home and mail away. It showed my DHEA level to be extremely elevated.

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I did go to an endocrinologist, but she didn't know what to do for me based on my symptoms. She just wanted to send me for the typical blood work. I didn't even bother having it done. Can you tell me what an endocinologist may look for? I'm pretty sure I have some hormones that are out of whack. I took one of those adrenal index tests that you do at home and mail away. It showed my DHEA level to be extremely elevated.

The pancreas is an endocrine gland which is why I suggested an endocrinologist. The endocrine system is quite complex affecting all bodily functions. Diabetes is the most well known disease of the endocrine system and there can be dysautonomia symptoms from the disease process; getting the diabetes under control gets the dysautonomic problems under control. That is just one example, of course. A quick wiki check yielded this entry.

There are so many different labs the docs run that it may seem they are running the same old, same old. Yet different specialists order a couple specialized ones at the same time to get a clearer picture of what is going on. Without getting the tests done, the doctor doesn't have the tools she needs to begin to unravel the problems. I highly respect any doctor willing to admit he/she doesn't know what is going on but is willing to work with you and investigate/research issues that come up. While your surgery was for some type of pancreatic overgrowth the underlying reason it occurred is not something that I would have a clue about and may necessitate getting referred to a specialist's specialist but that means being willing to work with an endocrinologist to eliminate the easy stuff.

It is very frustrating to have to go from doc to doc. We have been there. If however, you can have a chance to fully recover by getting the underlying problem sorted out I think it is worth fully participating with a qualified doc you feel comfortable with. Many of us can just barely control symptoms so we celebrate when someone is able to leave the land of dysautonomia.

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I actually asked her what tests she was running and they were all the typical thryoid, iron, liver ezymes, etc. The usual metabolic panel. I had that one run so many times I knew it would be pointless. But maybe a different endocrinologist would have some other ideas. I also wonder what could have caused my pancreas to become enlarged. At the time of the surgery the doctors decided it was probably something I was born with and just kept getting worse. This was way back in 1988 though. A lot of breakthroughs have been made in medicine since then, so maybe it would worth pursuing. Although, I've told a lot of doctors about it and none of them thought much of it. Not even my gastrologist.

I think I'll make an appointment with a different endocinologist.

In the meantime, my cardiologist never did say exactly how much salt to use. She only said to put liberal amounts in/on my food. My blood pressure often seems stable now, but I still have the excessive blood shunting toward my stomache after eating. Should I just buy a bp cuff and some salt tablets and maybe take a tablet only when my blood pressure is low?

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Apache

To explain your symptoms you really do need to find doctors who understand dysautonomia and know what to check. Your anxiety might be caused by an over-production of noradrenaline; your dizzyness and light-headedness might be caused by changes in blood pressure or blood sugar; your problems after eating might be caused endocrine dysfunction or problems resulting from very slow digestion; your sensitivity to medications might be caused by failure to produce an enzyme necessary to metabolise medications or it might be caused by another type of dysfunction of digestion or metabolism.

I was also scanned to within an inch of my life, and there were no significant abnormalities to be seen. I had huge numbers of blood tests, all of which were normal (except when I was anaemic). Like you, I have anxiety and sensitivity to medications.

I really recommend that you read the 'stories' on the DINET website and search the Forum for threads relating to your symptoms.

With best wishes

Dianne

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Sounds like a good idea to hook up with a new endocrinologist. To me it seems odd that the gastroenterologist was not curious about it and whether it was contributing to the current problems.

A blood pressure cuff is a good idea. It would allow you to get more in tune with your body. Instead of salt tablets, I would stick to food sources of salt for the time being - a can of chicken broth at lunch packs a lot of sodium and no carbs for increased digestion issues. I liberally salt my food and have been better since switching to Himalayan salt. If you do a search for salt on the forum you'll be reading for a while.

Remember to increase your fluids, too. The rule of thumb I follow is half your weight in ounces as a minimum - 150 lb. person would therefore drink 75 ounces of water, gatorade, G2 or combination thereof.

all the best,

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Hello Apache,

Welcome to DINET.

I'm sorry you've been having such difficulty finding a doctor who knows about and can treat dysautonomia. There is a Physicians List on the main DINET website. If you haven't checked that yet, you may find a doctor listed who is close to you.

You mentioned that your B12 is on the low side. Even though it is still within the normal range, you might benefit from higher levels. My POTS doctor told me that he has found that many of his patients do better with higher levels of B12, and he prescribes B12 injections for them. I know you said that you have a bad reaction to vitamins and supplements. I don't know if an injection of B12 would be tolerated by your body or not, but it might be worht a try.

You can also check out the What Helps page on DINET. There are many non-pharmaceutical options for treatment. Perhaps some of those would be helpful for you.

Rachel

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Welcome Apache~

From your post it sounds as if you might have orthostatic intolerance/orthostatic hypotension. I have the same problems with my BP, it's low lying down, and it gets really low (to the point of fainting sometimes) when I stand up. You really need to have a tilt table test to get to the bottom of your blood pressure and heart rate issues. Do you know what your heart rate is doing when you go from lying to standing? POTS is defined by a jump in your heart rate of at least 30 bpm when you stand up. I would definitely get a good BP/HR monitor so that you can track your numbers to see what your body is doing.

You can do a "poor man's tilt table test" at home once you have a monitor. Lay down for about 10-15 minutes and then take your BP/HR reading. Then stand up and jot down your readings at 1, 3, 5, and 10 minutes. Most people's BP will stay around the same, but some of us have BP's that drop significantly, which indicates orthostatic intolerance. If your HR goes up by at least 30 points, you may have POTS. If sounds like you have some kind of dysautonomia, which can affect my bodily functions and especially your brain "fog" and memory issues. It's important to find a doctor that really understands POTS, and there are a number of us on the Forum who had gone to specialists, such as at the Cleveland Clinic or Mayo Clinic. That would probably be your best bet, if you have someone to go with you...definitely look at the list on this site, though, because there may be a specialist near you.

Sorry so long, and good luck!

Cheers,

Jana

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I can't remember what my bp was. It seems like my problems are the worst after eating. I definitely have some major blood shunting going on. For instance, last night after dinner I got my usual head pressure and dizziness and I could feel my heart beating faster to compensate. My legs even feel heavy after I eat. Blood sugar problems have been ruled out. Plus, I've gotten to the point where I can handle some exercise, as long as it isn't too fast paced. The good news is that I have finally found a specialist in my area. I wish I could go to one of the major diagnostic clinics, but I'm not able to travel that far and I don't have anybody that could take me.

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The good news is that I have finally found a specialist in my area. I wish I could go to one of the major diagnostic clinics, but I'm not able to travel that far and I don't have anybody that could take me.

Wonderful news that you found a specialist near you. If you can get the blood pressure monitor before then you could chart out info to help you make the most of your appt.

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