2/9/10 9pm
I am so tired of bitching and whining about how horrible I feel. This is not the way I want to live my life. Today I was feeling ok, then felt the early afternoon crash. I feel icy cold and all I want to do is curl up next to my sweet boy as close as possible. Every time I get up I get a headrush and see spots. I have a tension headache and some neck pain I was feeling yesterday has turned for the worse and it feels stiff. I had to have Ed grate some cheese for dinner because it wears me out so quickly.
Why can't all these shitty symptoms just go away already? I want to turn on the radio and dance with my boy, but I know that the movement will make me want to barf. I feel pathetic. Half of me knows that this isn't necessarilly my fault, I can't really help it, its just brain chemistry. The other half is pissed off. wasn't it bad enough that my baby died? But my other child is still living, I am still living and I want to live my life. I want to get outside and get the yard ready for spring, get some cold frames built, move my ducks to an area where they can eat all the damn slugs they want... finish my house projects, take walks with Guy... But I am locked up in a body that doesn't want to cooperate. When will the sick feelings end?
2/10/10 as promised, here is a list of all of the things that I can think of that I have tried to remedy my issues:
st. johns wort
bee pollen
various b vitamins (including injections)
various amino acids
coq10
vitamin e
folate
5htp
actually, I'm not going to list off all the supplements I have tried, as it would probably be more appropriate to ask what I haven't tried ( I cannot think of anything). There was a time in my life that I was sure that I must be suffering from a nutritional deficiency.
acupuncture with two different therapists. no results.
I tried eliminating wheat and all milk products for at least a month. I tried eliminating sugar for several
months.
Sometimes I get migraine headaches. I have had CT scans to make sure I don't have a brain tumor.
I have tried wild yam extract for pms issues.
The naturopath community had me convinced I had Candida issues. I was taking prescription medication diflucan every 5 days to try to erradicate it out of my body. No difference.
One naturopath ordered a test in which I collected all my pee for 24 hours. This was a hormone imbalance test. Nothing found.
I'm not sure how much money and time I have spent talking to various therapists.
Some people suggest low levels of light as the problem but my symptoms are the same at the opposite time of year.
Then I spent about a thousand dollars on various genetic tests to determine what was wrong with me. I was told that I had a genetic polymorphism and that I do not produce catechol-methyl-o-transferase which is supposed to degrade estrogen and does something to regulate the norepinephrine and epinephrine in my brain. I do still wonder if the doc was on to something here, but the regimen of pills that he put me on were ridiculously expensive and didn't help. Every time I mention this to regular medical docs they shrug it off.
I have tried prozac. Didn't do anything. Celexa did nothing. Cymbalta made me
ten times sleepier.
I've tried various excercise regimens, specifically vigorous excercise as all the docs say that this is most effective at reducing depression symptoms. There was a period in my life that I excercised at least an hour a day, waiting for the energizing effect to kick in. I noticed no difference. There were times, especially premenstrually, where I felt worse. I remember barfing one day when I was running down at Oaks Bottom.
I tried cutting out all alcohol for one year.
I tried using psyllium seed and increasing the fiber content in my diet to try cleaning out my digestive system.
I've tried cutting out all caffeine. I've tried switching to green tea.
I thought perhaps I wasn't having complete sleep cycles. I tried melatonin but I felt worse.
I read a book that says that people aren't getting enough protein which are the precursers to serotonin, etc. I followed the diet program but it didn't help.
Also tried cutting out meat. No luck.
I thought maybe I had carbon monoxide poisening, and since then have lived with a carbon monoxide detector.
I've tried various "detoxifying" herbs such as milk thistle and dandelion to try to clean out my liver.
I've researched various medical illnesses from thyroid to hormone conditions and picked doctors' brains until I was blue in the face. I keep pressing doctors to make sure I am not diabetic.
all my eyes want to do today is close. am having a hard time writing. I keep yawning. my thoughts are choppy and words aren't flowing out of me. better take a break.
5 comments:
Okay, I have a better picture.
I am frustrated, but you are probably 100 times more.
One suggestion is to get tested for the xmrv retro virus. I suggested that before I know, but I'm not sure what your response was.
Every spring here they do a comprehensive blood test to community members that pay the $50 fee. They give you the results directly, along with a guide for interpreting the results. Maybe you should partake this year as a way to start over with fresh information.
Those are two suggestions I can think of.
Another consideration is maybe to reconsider the brain chemistry diagnosis, since there is so much physically going on.
Have you kept a food diary and matched it up to the symptoms you have a few days later? It is another thought.
Or another diary keeping track of physical environments or encounters with people.
Obviously since there are good times and bad times, something must be triggering it.
I'm just trying to offer something that will help. It's all I know to do. I want you and Guy to dance too.
Love,
Mom
Hi Amy Dear~~ It's NOT your fault. Blaming yourself will only make it worse. You know this but I thought I'd remind you anyway.
Your mom mentioned a virus. I'm wondering about Lyme disease. If you have a few minutes maybe you can Google it. People get all kinds of weird symptoms like yours and doctors are scratching their heads. But there is a more conclusive test out there now.
As for the genetic component, my migraines most definitely have triggers. Too much sugar, especially with high fat, [like cookies], too little sleep, too much upset in my routine, which forces me to keep my life fairly regimented which means being home bound a lot. If I follow my self imposed rules, I'm okay.
You also mentioned melatonin and sleep cycles. Could it possibly be sleep apnea? From what I understand
many people don't even know they have it until they go through the sleep test.
Have you spoken with your psych doctor about the polymoprhism?
You mention carbon monoxide but have you checked for Radon?
For someone who felt her words were choppy, you did a great job of explaining things. I know at this point you're probably tired of pursuing more possible causes of your distress but I hope you'll keep searching when you can. Love, Grace
Hi Amy Dear~~ It's NOT your fault. Blaming yourself will only make it worse. You know this but I thought I'd remind you anyway.
Your mom mentioned a virus. I'm wondering about Lyme disease. If you have a few minutes maybe you can Google it. People get all kinds of weird symptoms like yours and doctors are scratching their heads. But there is a more conclusive test out there now.
As for the genetic component, my migraines most definitely have triggers. Too much sugar, especially with high fat, [like cookies], too little sleep, too much upset in my routine, which forces me to keep my life fairly regimented which means being home bound a lot. If I follow my self imposed rules, I'm okay.
You also mentioned melatonin and sleep cycles. Could it possibly be sleep apnea? From what I understand
many people don't even know they have it until they go through the sleep test.
Have you spoken with your psych doctor about the polymoprhism?
You mention carbon monoxide but have you checked for Radon?
For someone who felt her words were choppy, you did a great job of explaining things. I know at this point you're probably tired of pursuing more possible causes of your distress but I hope you'll keep searching when you can. Love, Grace
Hi and thanks for the comments. I am feeling even worse today.
I will ask about the virus but I did read about it and it does not sound like my symptoms. They also have not proven that the virus actually causes any problems and do not have treatments for it.
I tried the whole food connection thing, that did not help.
I have called my primary doc and left a message saying something has got to give. I will ask about all these misc possibilities, but none of them ring true to me.
I feel like I know what it is that is happening. Well, kind of. All of my issues seem to cycle dramatically which typically coincide with menstrual cycles. I feel that my main problem is hormonal and stress/life events excacerbates the sickness feelings. I seem to be about 90% better when I am not hormone cycling.
I have tried Yaz in the past, and it made me very sleep. So doc has me on Levora, which is supposed to be good for PMDD as well. He's got me on a continual cycle (no sugar pills), which is supposed to erradicate periods alltogether. But it took my body a while to get the message. Last month was the first month I didn't have a period. But I still feel like the hormones are cycling. In fact I even feel crampiness downstairs so I'm wondering if I am having a late period.
I hate this. If this is hormonal, I feel that I am ready to rip out my ovaries. Seriously. If it gets rid of the 2 week out of 4 week hell, that is fine.
I do think it is awfully unusual that I returned to menses so fast after being pregnant this last time, even though I was breastfeeding Guy just as much as the first time I was pregnant. It took me a year and a half to have a period again after pregnancy with Guy and I started again two months after Jemma. Strange.
I pulled out the old tests showing the VAL158m (you can google that term) gene varient. I don't know if this is just quackery or if it could possibly have some relevance. It is a gene that is implicated in degrading estrogen and catecholamines. I read recently in some article saying that this gene is associated with PMDD.
Oh, and I didn't mention it earlier but the migraines seem to only come about during times of great stress AND premenstrually. Yuck.
Anyway, I finished several new sewing projects recently. Maybe I'll take pics soon and post them. This seems to be one thing I can do, as it doesn't involve much moving around.
Thanks for the additional information. I'm glad you've called the doctor, and hope that helps.
I look forward to seeing the sewing projects.
Love,
Mom
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