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Post by colormist on Dec 2, 2010 10:38:41 GMT -5
I was at my parents house on Thanksgiving. I had arrived the day before after a 4 hour long car ride. I had a suspicion that my "monthly visitor" might decide to make a random appearance halfway into the car ride, so I was prepared. I get really bad (puking, screaming, knock-you-unconscious) cramps, so I don't ever want to be not-prepared. I tend to take ibuprofen over tylenol as Tylenol is bad for your liver and ibuprofen is bad for your kidneys. I have two kidneys and only one liver. I'm not sure this is logical, but I have to take LOTS of painkillers to be able to function (like eating, going to the bathroom, and taking more painkillers) and I worry about my liver.
So, anyway, Thanksgiving morning I wake up at 5am to more cramps. I left my drugs upstairs and I'm in pain and really sleepy, so I just go back to a restless sleep. 7am rolls around and I decide to get up and take drugs.
I get dressed, take the dog out to go potty, and head upstairs to take a shower. My sister chases me out of the bathroom, so I take my ibuprofen and wait for her to get out of the bathroom. 20 minutes later, she's out of the bathroom and I'm really hungry, but my OCD makes me take a shower before eating.
15 minute shower is perfectly fine. My cramps are gearing up to the point where I want to just drink tea and curl up in a fetal position. I'm also feeling really hungry and weak. I manage to dry off, but then I have to lay down in the bathroom until the pain passes.
I don't ever recommend laying down in any bathrooms.
The pain goes away, but hypoglycemia is taking over. I start to get dressed and manage getting half my clothing on before I have to lay down again.
Really, don't lay down in bathrooms. It's really gross.
Finally get my PJs back on and shuffle into the kitchen (5 feet away from the bathroom). I'm panting and I sit down. My mom (she's a nurse) looks at me and says "What, wait, what do you need?"
"Food" (me) "Shredded wheat in bag" "Hypoglycemia... cramps" I think I'm panting and half laying down on the table.
My mom quickly makes me cereal, but I don't have the energy even to lift a spoon. She suggests she force feeds me then says "I'm giving you sugar"
"NO SUGAR... MILK" I swear I turn into a neanderthal. I have no idea how many braincells this mistake has killed.
I manage to sip a little milk in between panting like a freak. I gagged on my second sip and I thought for sure I was going to ralph up all my hard work. Thankfully, due to my massive amounts of experience with feeling nauseated, I manage to keep everything down. My mom comments that I am sweating buckets all over and begins dabbing my forehead with a wet washcloth. I can't decide if I'm hot or cold. My cramps are insisting that I'm cold and my hypoglycemia says I'm hot.
I eventually drink the half-glass of milk and I think I fell asleep at the table. A half hour after I walked out of the bathroom, I wake up at the table and eat my soggy, icky cereal. I notice that I'm soaked. It feels like I just went on a 2-mile run.
My cramps managed to disappear while I was having an attack. But they made sure to make a reappearance as soon as my blood sugar levels were back on track. My mom and I decided it was the perfect trifecta cramps, ibuprofen, and no food. The ibuprofen woke up my stomach, the cramps wiped me out, and the holidays threw me off my usual eating schedule.
Both my mom and dad commented about how they get like that when they are hungry--but they've never seen it that bad. I'm wondering if that's a sign that parents might have the HFI gene or just a crazy coincidence. My mom said she gets like that only after she's eating something that's too sweet--her blood sugar spikes then crashes and she gets the shakes. My dad says his hits when he doesn't eat.
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Post by charlie on Dec 2, 2010 13:49:13 GMT -5
Oh Laura, poor you, what a nightmare. No sure you and thanksgiving get on, didn't you have trouble with it last year!!!!!!!!!!!  ?? No bathrooms not good to lie in, annoying for anyone else wanting to use them too.!!!!!!!! That point you make about parents is interesting because I do def get blood sugar yo yos sometimes and due to lifetstyle am very erratic eater, spend so long making sure meg catered for I suddenly realise I am close becoming a roaring dragon because "der" - haven't eaten myself!!!!!! I also remember as a teenager getting very occasional momentary dizzy spells. But I seem fine on fructose, in fact my stepmum used to use fructose instead of normal sugar in cooking and I certainly didn't have any effects that meg gets. Hope it all settles down soon. Thank god for your sensible mum |
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Post by ukbill on Dec 2, 2010 14:06:54 GMT -5
Colormist, Before I go one about genetics.. that sounds like a blxxdy bad way to start the day!  To stop gastric Cramps I take Colofac which is amazing stuff it will turn a really bad day into a good one in 20 min.. although I am assuming your cramps were not of the "gastric" variety? Genetics and HFI.. I have been told the following. 1/. HFI is caused by a recessive gene. 2/. That in order for me (and you) to be born with HFI both our parents needed to be expressing 1/2 the gene (if that makes sense?) 3/. If both parents express 1/2 the gene then 1 in 4 children may have HFI. 4/. If one parent is HFI and the other is expressing 1/2 the gene then 3 in 4 ( or 2 in 4 sorry I cannot remember clearly) children may have HFI. 5/. If both parents are HFI then all the children will be HFI. 6/. If one parent is HFI and the other is not expressing the gene then it may be that one in 4 children may be HFI. There are other formulas for the number of children (born to parents with one being HFI) expressing 1/2 the gene but I cannot remember them. This is what I understand of it anyway. In my own family history, my Grandfather (mothers side) used to get the shakes if he was hungry or if he had to work hard on little food. My own mother is not keen on sweet things and will only occasionally eat anything sweet. but shows no sign of HFI when she eats sweet things. I have had 4 children and although none are (or were) HFI my daughter had problems with blood sugar as an infant and seems to avoid ever getting hungry by eating all the time.. Yes she has a slight weight problem (not too bad) and a VERY sweet tooth. I wonder if the variances in tolerance, reaction etc.. we seem to have between us HFI's could be caused by the combination of several different genes that equate to HFI symptoms from our parents? If us getting HFI is a result of a combination of 2 parental genes then if one is a slightly different recessive gene to the other then it would stand to reason there could be 3 variants of HFI. A+B, A+A B+B This is assuming there are only 2 slight variants of the recessive gene! Has anyone got a visit to a Geneticist due soon to ask them? I apologise if I've remembered this wrong but I will try to re-acquire the information from "Climb" in the UK and edit it later if I've got it wrong. |
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Post by anastazya on Dec 2, 2010 14:29:24 GMT -5
I'm so sorry Colormist. Not sure about genetics. The only person who was close to me is my cousin and my Graet Aount. One is one my Mom's side and one is on my Dad's side.
What I am curious about are the cramps. Mine were like that too.....all the way down to the fetal position. And I agree...sleeping on bathroom floors suck...been there for both too much sugar and cramps.
I was finally diagnosed with endrometriosis. And I eventually got a hysterectomy...one of the best things that ever happened to me. No reason for cramps other the the endrometriosis....but my Gyne called it stupid uterus syndrome. He saw it in one other patient. I am wondering if there is a coloration with that and the HFI?
Sara
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Post by colormist on Dec 2, 2010 19:06:24 GMT -5
Charlie, I did better last year. I was able to keep to my routine (I was the only new person spending the night) and snack more frequently. My mom is very accommodating to my food preferences and dotes on me when I feel ill. Mom's are awesome all around.  Yeah, Bill, it was the female cramps. My geneticist did ask me about my parents having hypoglycemia. I knew my mom would get like that, but I just thought it was coincidence until my dad chimed in over the weekend and mentioned that he also had hypoglycemia when he didn't eat. Sara, my cramps weren't as severe when I was on "The Pill" but I really suck at taking it on time every time. I've been off birth control for about 5 years now (no protection and no babies), but I think I should probably get back on it just so I can take less ibuprofen. Everyone I talk to acts like it's really common to have really painful cramps, but I'll check with my doctor to see what she says. It looks like I have a few of the symptoms. |
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Post by hfimomof3 on Dec 2, 2010 21:02:07 GMT -5
Wow, I have never had an experience like that with with cycling. Are you sure you don't have endometreosis or possibly polycystic ovaries? I have also not experienced the hypoglycemia you describe unless I eat something with sugar. I've never woken up in the morning feeling that way. Could you be diabetic?
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Post by colormist on Dec 3, 2010 9:20:18 GMT -5
hfimomof3: reading the symptoms, I definitely do not have polycystic ovaries.  I'm going to check with my doctor about endometreosis--as I have more than a couple symptoms. I've had my bloodsugar checked a few times over the past few years and they didn't find anything to be concerned about. |
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Post by Tammy on Dec 4, 2010 10:59:51 GMT -5
Not a good way to start off your holiday. I still have the greatest respect for your (and others) mom for the whole time you were growing up and not making you eat things you didn't want. I still don't know if I could have done that for Regina without the DX. But, now that you know FOR SURE, she wanted to give you sugar? ? Apparently it's still hard to stop being a nurse in the normal sense. I don't have any issues with hypoglycemia. So as a HFI-parent, this wouldn't have been any kind of clue. But then again, Regina really doesn't have any issues with it that I've ever seen. She does drink milk all day long which she gets by herself, but even before she could get it herself she never had any issues. Her HFI strain is different, so that must be different, also. She never developed normally. She only has what the doctors called "gonads" for ovaries. A blessing in disguise. We've never had to worry about cramps and things. For my own cramps, I also always preferred ibuprofin - but not for anything like you're describing. |
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jen
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Post by jen on Dec 6, 2010 22:48:36 GMT -5
@laura... Wow It is almost a SuperFecta. But while reading your story I started thinking about a couple of things. I had the same problems with my periods. I described the pain ones to my friends who had kids and they told me that the pain I was describing sounded like contractions. I had these for 2 years, 2 weeks on 2 weeks off. And just like you, no protection no babies. And I definitely knew I was the 'problem'. Nothing helped and finally I decided with my gynecologist to have a hysterectomy. I was 37. Single then. Not fertile. And 2 weeks on 2 weeks off was getting too much. I already accepted the fact that I couldn't have children. It is what it is. Naproxen was usually the only meds that kind of helped.
The other thing is our parents; both my parents do not really eat a lot of sweets. I know my sister doesn't either. My mom has hypoglycemia. My HFI was an excuse for my mom not to buy candy at all. So my sister, who doesn't have HFI, grew up without candy and other sugary food. And she does the same thing to her boys. No candy or other sugary food products in their household. So I guess its in the genes, one way or the other.
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Post by anastazya on Dec 7, 2010 19:05:09 GMT -5
Jen.....I had the same thing too.....no children and cramps that wouldn't quit. Got a hysterectomy when I was 32. I'm 37 now and still happy I did. Totally the best thing I ever did. Still hug my gyne when I see him! : )
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jen
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Post by jen on Dec 7, 2010 19:23:25 GMT -5
anastazya.... O yeah I know. One the best choices I have ever made in my life.
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Post by colormist on Dec 9, 2010 12:44:10 GMT -5
Oh man, two weeks?!? Mine only last 2-3 days. The first day is always the most debilitating. I was always told that childbirth is the most painful thing ever. For me, cramps are the most painful thing ever (for any men who are reading this, if you can equate it to preferring to rip out your kidneys with your own bare hands rather than continuing in the pain you are in, then you are close). I can't even imagine something WORSE than cramps--and that's why I've always been a bit skittish about childbearing. However, if cramps = labor, then I have no idea what women complain about. I have the equivalent of one child a month. It doesn't sound like it's the exact same thing, but I'll check with my doctor just the same. |
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Post by anastazya on Dec 10, 2010 6:11:57 GMT -5
Mine lasted between 5-7 days...both my cramps and my period. Never regular, and always painful. At the end, I was getting waves of pain along with the regular cramps. Most horrible experience ever. Mine started out 1/2 day when I was 15 and it went up from there. 16 years of chronic pain was enough for me!
Good luck Colormist! Let us know how it goes.
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esmee
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gluten, lactose, fructose, histamine, and salicylate intolerant
Posts: 236
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Post by esmee on Jan 10, 2012 1:52:58 GMT -5
I know this is an older thread, but wanted to add my 2 cents anyway.
I have had horrible cramps since I started my period at age 13. I have never been diagnosed with endometriosis. Two years ago I decided to adopt a very low fat diet (10% or less of calories per day), and much to my astonishment I no longer got menstrual cramps after only 2 cycles. I now believe that the amount of fat in my diet was the major cause of my terrible menstual cramps. I normally ate about 30-40% of my calories as fat.
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Post by Sm on Jan 10, 2012 4:01:11 GMT -5
I am 55 and have had endometriosis - cramps, polyps, heavy periods until menopause recently. But now I came to understand that poor liver functin is associated with estrogen dominance and the symptoms associated with it. We know that all HFIs have a problem with the liver. www.yourmedicaldetective.com/public/1011.cfmAlso, my mother ,who did not have HFI, constantly suffered from hypoglycemia, the more she suffered the more sweets she ate and the more unwell she became. There are theories that carriers can be symptomatic as well. www.ncbi.nlm.nih.gov/pubmed/20848650 |
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Post by colormist on Jan 10, 2012 11:41:18 GMT -5
My mom also has bad hypoglycemia. I've trained her to keep glucose tabs or smarties with her in her purse so her blood sugar doesn't drop before she can get food. My dad has mentioned he gets sick if he eats too many sweets. He eats a lot of sweets though. It doesn't seem to deter him. Esmee. If I could adopt a low-fat diet, I would. I have tried many times, but it just exacerbates my hypoglycemia and has never really helped my cramps. The only thing that has ever reduced my pain was birth control, but I'm at point in my life where I don't have health insurance (and also have been trying to have a baby), so I can't continue that option right now. :\ |
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esmee
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gluten, lactose, fructose, histamine, and salicylate intolerant
Posts: 236
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Post by esmee on Jan 10, 2012 11:51:34 GMT -5
Yes, colormist, I can see the problem. I have only just found out about HFI and I think that staying low-fat is going to be very difficult, but we will see. I do know that I cannot eat white rice without something else to slow down its digestion or I will get low blood sugar. So, I may just have to live with the cramps in exchange for the all the other benefits of eliminating the fructose.
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esmee
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gluten, lactose, fructose, histamine, and salicylate intolerant
Posts: 236
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Post by esmee on Jan 10, 2012 11:53:36 GMT -5
sm--thank you for that info on liver function and estrogen dominance. makes perfect sense to me. none of the other women in my family have ever experienced the severe menstrual cramping that I have.
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Post by gretchen on Jan 10, 2012 21:43:47 GMT -5
Colormist, I so felt for you when I read your account of that awful morning! I hope you haven't felt that terrible again.
I'm also curious about your severe low blood sugar episodes. Can you connect them with eating something higher in fructose than you usually eat? Or do they just seem to come on totally at random?
Like Esmee, I too saw my menstrual cramps disappear when I ate low fat, which was such a blessing. I'm working out how to eat low fructose now, and I'm not sure I will be able to remain on such a low fat diet while doing so. We'll see. This seems more important though.
I've been trying UKBill's suggestion to have psyllium seed with my meals and that is hopefully slowing down the digestion of the white rice. It's very early yet, but so far so good!
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Post by colormist on Jan 11, 2012 9:23:35 GMT -5
I don't recall what I had ate the previous day. Probably something I shouldn't have. That's usually the case when I'm away from home. I remember eating sauce-free pizza that I shouldn't have one night at my parents', but I"m not sure if it was the night before thanksgiving. I haven't had an attack that bad since then. Here recently I haven't had any severe hypo/hyper glycemic attacks. I'm always sure to keep smarties in my purse in case I start to get hungry and I eat them very slowly until I can get normal food (carb & protein). I'm slowly starting to omit things I cheated with (like bill did!): beans, red wine vinegar, etc. That one incident scared me straight. My mom thought I was going to have to be rushed to the hospital. I'm sure I've had attacks like that before (the one incident where I was out walking my dog on a hot day without food was very close), but never with people around me to have a third person view. I get so inwardly focused that I can't imagine what I must look like as an outsider. I will have to investigate this psyllium seed stuff. Bill has a very usual diet. I tend to wait and see what his results are before trying them myself. |
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I'm going to check with my doctor about endometreosis--as I have more than a couple symptoms. I've had my bloodsugar checked a few times over the past few years and they didn't find anything to be concerned about. 