Idiopathic Reactive Hypoglycemia


Dec 17, 2015

So to make this as short as possible. About two and a half years ago I had a really bad low blood sugar episode. I'm not a diabetic, I wouldn't say diabetes runs in my family considering only a few have it. I had a really bad diet years ago, few energy drinks a day, cigarettes, and junk food out the ying yang. Now the day it started I hadn't eaten much so it could of happened to anyone. Felt all the symptoms, and thankfully I work at a hospital so when they checked them it was a 47. Ate some food and felt better. That day after all those years of bad food I cold turkey quit all the bad foods and energy drinks. Didn't stop smoking though. I was very active, I mean skateboarding for about 10-12 hours a day. Very thin, about 125 pounds from the age of 15-21. Well since that night it happened I became a very panicked person. I started binge eating because I always felt the symptoms of it, although sometimes I couldn't tell the difference between anxiety and low blood sugar. So I would check my sugars, sometimes they would be fine, other times they would be below 70. When I panic they get worse. Well now I eat the same thing everyday, eggs, spinach, tomatoes, cheese, chicken, protein packs, low calorie gatorades. No sweets what so ever, and I've basically become agoraphobic because of my sugars all the time. I always feel dizzy, weak, shaky, faint. But like I said sometimes I can't tell the difference. These winter months seem to get worse, now lately I can't even tell when they're getting low. Earlier today they were 67 and I couldn't even feel it. I used to though. My anxiety has gotten a lot better but not fixed. I'm afraid it'll drop in my sleep and I won't wake up it's horrifying. No meds ever, no surgeries, nothing prior to this. Always healthy as could be.

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I payed private for a neurologist did MRI on brain came back fine he diagnosed me with severe migraines and put me on propanol these have calmed the symptoms but I am worried as I am still left with a dull pulsating on the left side and have a bit of blurred vision suffer a lot with fatigue and when I try to exercise it kind makes my head

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It was confirmed I had BIH.

Ever since, I've had to have Lumbar Punctures every 6-8 weeks, with the CSF always way too high. I was put on Diamox too, which didn't do anything at all. I'm now on Topiramate (Topamax), which also doesn't work for me.

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I am a woman of 56 and have never been overweight and up to these eleven years ago enjoyed good health.

My first symptoms started eleven years ago whilst on holiday in France. My elbow and knee joints became difficult to move and painful, particularly when carrying shopping. A fortnight later on my return to England the pain had increased, my ankles had started to swell and I felt generally very unwell, not unlike an onset of influenza. My doctor thought it may have been an insect bite and prescribed a course of antibiotics which had no effect. He then tested me for Lyme's Disease and put me on a further two courses of antibiotics, none of which made any difference. The Lyme's Disease test was negative.

By this time, six weeks from the first symptoms I was almost bed-ridden. The joint pains were almost unbearable, I felt itchy all over and isolated little bumps that were extremely painful to touch appeared under my skin, two on my hand and one on my rib bone. After a couple of days they disappeared and I was left with bruises. Some of my knuckle and finger joints were swollen and started to become slightly deformed. I found that I was passing water about every 30 minutes and had pronounced anxieties, insomnia and depression....I had never suffered from depression before. I also started to experience heart flutters and eczema in my ears.

In desperation I began searching (pre-Google days) for clues in some home medical dictionaries. I came across gout and one of the recommendations for managing this affliction was to cut out all rich and fatty food. Although I knew I did not have gout I thought my problem may have been related, particularly with my swollen ankles which by then had turned a rather nasty brown colour. I decided to experiment and immediately cut out cheese, butter, mayonnaise, oils and fatty meats to achieve a very low fat diet.

Within two days I was feeling much better and over the course of the next month I continued with my experiment and found that within about 24 hours of starting on a higher fat diet again my symptoms would begin to return. Over the next four years and after spending a lot of money on private consultations with no diagnosis being given my doctor eventually referred me to the Royal National Hospital for Rheumatic Diseases in Bath. The consultant diagnosed Poly-Reactive Arthritis. I told him about my very low fat diet (under 20 grams a day) which I had been trying. He said if that worked for me I should keep doing it. Subsequently I developed lactose intolerance. Symptoms from this appear two hours after eating any dairy but I have not found any known connection between this and Reactive Arthritis. I also developed problems in my lower back and X-Rays confirmed that this was caused by arthritis. I am unable to lift even fairly light weights and cannot operate a vacuum cleaner without getting severe back pains for a couple of days.

The diagnosis of Reactive Arthritis was six years ago and if I keep to my very low fat diet I am able to lead an almost normal life. However, I now find that in the past year I have had an increasing amount of urological problems such as cystitis and what were though to be bladder infections, although all the urine tests proved negative. I have also been investigated for possible kidney stones but again this has been negative although on one occasion there was blood in the sample. I have found out in the past few days through Google that symptoms like this are often associated with Reactive Arthritis and called Interstitial Cystitis.

Recently I found the web site for the Arthritis Research Campaign which has a very good information booklet on Reactive Arthritis and in an answer to my questions advised me that cutting down on fat can make a difference in most types of arthritis including inflammatory arthritis, particularly saturated fats which can increase pain and inflammation in the body.

They directed me to their information booklet Diet and Arthritis on their web site at www.arc.org.uk. In this publication they recommend concentrating on oils such as olive oil, walnut oil and oil from fatty fish. I thought I would again experiment and only eat the fats they recommended even though I felt sure that too many olives and olive oil dressing would cause a reaction. Twenty four hours after crossing my 20 gram threshold my symptoms reappeared then slowly subsided after I returned to my strict diet.

In all of my research I have not come across any suggestion for treatment of Reactive Arthritis by a low fat diet. I only know that it has worked for me so far.

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My left knee has always been the problem joint and the swelling always impresses even the most experienced orthopaedic specialists. In the past I regularly defied doctors advice and played football once the swelling had subsided enough to make movement comfortable, though the knee is always huge again the next day and has taken a week or so to reduce in size.

I'm now in the middle of another bout of Reactive Arthritis (from food poisoning abroad, which is nearly always the trigger for mine). I was on crutches for 2 weeks, though not hospitalised this time and am not going to risk a set back in recovery so am resisting the urge to play football this season. This arthritis started in April and from experience I'm hoping to see the swelling settle down in the Spring. Takes around a year for me each time. For me the key to getting through is to keep as active as I can with a gradual increase in sports until the swelling reduces completely, while not pushing too hard too soon.

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