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Where do I start?

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Old 01-22-2009, 07:09 PM   #1
Join Date: Jan 2009
Posts: 4
GehyraVorax HB User
Arrow Where do I start?

I'm new here, and I was hoping someone might have some idea where to look for what might be wrong with me.

I was diagnosed with bipolar II, OCD, and several anxiety disorders a few years ago. I am actively seeking treatment and have been on and off various medications. I've had physical problems, too, but I haven't been able to get any doctor to take me seriously. They've always brushed it off as being no big deal or psychosomatic. I'm posting all my symptoms that I can think of that may or may not be relevant, but if you have an idea or think I might have missed something, please feel free to ask.

For as long as I can remember, I have had headaches and stomach aches. These range in severity but seem to be ever-present. I remember when I was very young (under seven), I went to doctors and specialists to see if they could figure out what was wrong with me. I recall being in hospitals several times and going through many tests. Ultimately, they decided it was allergies. I was not allowed to eat the things I was allergic to, began an allergy medication regimen, and got allergy shots for quite some time. I recall things getting marginally better, but never going away completely. I told my mom about this, but she brushed it off.

Skip to high school years. I started getting *really* bad headaches, worse than what I got before. I also started getting more sick to my stomach -- diarrhea, sometimes constipation, generally "feeling sick to my stomach," and vomiting more often than seemed normal. In addition, I started feeling tired and in general achy. I developed a specific problem with my knee and shoulder, but my joints in general just hurt. I went to see an allergist again, who changed my recommended diet and anti-allergy medication. At this point, I stopped the allergy shots due to various reasons, including that they seem to be at the very least not helping. I got mono, had an allergic reaction to Benadryl (which resulted in a trip to the ER), and have had pneumonia or bronchitis or some other lung problem every year. I was also diagnosed with allergy-induced asthma and was given a rescue inhaler, which I used maybe three times a year at most. However, this was mostly an unwillingness to use it, not a distinct lack of need. I later found out that what I thought were asthma attacks were actually panic attacks, but my most recent allergist asserts that I do actually have the asthma.

So, I graduate from high school after marked problems with my mood and anxiety, but was sort of in denial that anything was wrong in that department. The physical symptoms increasingly became worse, but I got reassurances from my primary care physician that they ordinary growing pains and nothing to be concerned about.

Off to college. I go away and get depressed. Still having the physical symptoms with a marked increase in nausea and vomiting. I assume it's just because I'm away from home, and return. Off to a local college. I do fine for the first term, but CRASH the second term. I stop going to class, can't sleep, and begin vomiting about every three days or more. The headaches have gotten much worse at this point, as well. I'm starting to develop back pain, as well as increased frequency and level of joint pain and fatigue. At some point I developed what was, at the time, quite possibly the worst headache I've ever had (have since had worse ones) that keeps me awake for three days because of the intense pain. I go to the doctor several times, get prescribed a sleep medication (which makes everything taste aquamarine), and am told that I am just over-stressed and probably have a stomach ulcer. I was told to take and OTC acid-reflux remedy for approximately three times the recommended dosage time. I did, at some point, develop a very sharp pain in my stomach. After the end of the term and no change, I being to realize that there is something very wrong.

I go back home (again) and seek out a psychiatrist. I am almost immediately diagnosed with bipolar II, and over the course of my initial treatment, diagnosed with various OCD/anxiety disorders. I've been told that my symptoms are primarily psychosomatic, but to be sure, I get a full blood workup done. It's worth mentioning at this point that my mother has a thyroid problem and has been testing me at least once a year through blood work for that and related problems. Those have always come out normal, with the exception of being anemic, having a really high cortisal level, and on one occasion a really low estrogen level (later told it was within normal ranges and probably due to the type of birth control I was using). Anyways, nothing really remarkable, according to my psychiatrist. Just to be safe, I have my primary care physician go over it, who agrees.

A little while after seeing the psychiatrist initially, I go to see an allergist. I tell him before the test (done on the back with what felt like pin pricks) that I have *really* bad allergies. He kind of laughs at me and says he gets that a lot. Just to be safe, however, he checks on me after five minutes -- the test is supposed to take fifteen. He walks in, stops dead in his tracks, and turns around to shout for a nurse. Not at all comforting... She, of course, freaks out too when she sees me. I reacted severely to everything they tested me for except three types of mold. They give me about five Zyrtec and ask me repeatedly if I need an inhaler (which they gave me anyways) or even a shot of eppy. I come back a week or so later to be tested for more things, all of which I react severely to (and am now only not allergic to two types of mold). I'm told to keep a rescue inhaler with me at all times and take Zyrtec twice daily. After long discussion with the allergist, he concludes to stay away from garlic, whole-grain things (bleached flour is mysteriously mostly okay), soy, and to cut down on my milk intake. It should be noted that even lactose-free things still bother me, but not as much as lactose-included. It should also be noted that I have found out by trial and error that the closer I get to organic-type foods, the more likely I am to have a reaction, as well as the more processed things seem to be, the less the seem to bother me.

The allergist, after listening to my stories about my stomach problems and headaches, concludes that most of what I am describing is not actually a typical allergy reaction. He thinks I have a neurological problem, especially because somewhere along the line I had developed dizziness, lightheadedness, and boughts of discoordination and confusion (including in this randomly running into doors [not super-common], feeling like I'm going to fall over or faint, being unbalanced, tripping on things that are not there, and other things that go along with that), and refers me to a neurologist. The neurologist listens to me and performs several coordination/balance tests and concludes that the discoordination and confusion are most likely from panic attacks and agoraphobia. He also concludes that I have both typical and atypical migraines. We try a variety of medications, including both anti-seizure and migraine-preventative medication (which I had also previously been on related medications for my bipolar) that have been coordinated with my psychiatrist to make sure I would have no adverse reactions (which I did) or interactions.

After nearly a year of this, the simplest thing winds up helping -- a low-level constant dose of indomethicine (basically like Tylenol). This helps prevent the everyday symptoms and some of the lesser-worse symptoms. It did not, however, help my sudden-onset severe ones. For this, he prescribed some extra-strength painkiller. I think I tried a few different ones before finding something that actually worked. Also, before my first appointment with the neurologist, I had the worst headache I have ever had, which lasted about a week and coincided and then caused my not being able to sleep at all. This started me off into a manic episode, but also wound up with me in the ER. I was given anti-nausea medication (almost all my headaches are accompanied by some stomach problem, usually nausea or vomiting, or both), an LP, and, when they couldn't find anything actually wrong with me (except a UTI, which I had been having chronic ones, and was given antibiotics), morphine and a strong prescription painkiller (which actually didn't work that well).

At this point, I feel I should mention my reaction to medications. Whatever I'm on, I tend to have side effects. Not matter what. These, for my bipolar medication, tend to be dizziness, a general not-feeling-well-feeling, and perception problems, including "fuzzy" vision and almost-hallucinations. I also tend to have the side effects that are noted as not being that common. For example, on Lamictil (sp?), I got the mouth sores and skin problems. Those that I cannot tolerate or blatantly make me sick, I am taken off of before the prescribed trial period is over. Those that I can tolerate quit working. After a few months, I have to significantly increase the dosage, and then it altogether become ineffective. The one exception to this that I have had, I had to temporarily stop taking it. I had been relatively fine on it. When I started taking it again, I had massive side effects (that I did not have before) and could not tolerate taking it, not to mention it had ceased being effective. Additionally, I have to be on the lowest dose available or I simply cannot tolerate it. The exception to this seems to be pain medication, of which I invaryingly need a stronger medication/higher dose.

So, this has been going on (the medications/bipolar, etc. treatment) for a little over four years. My mother has been in denial that something is actually wrong with me, and was pushing thyroid issues and nutrition. After her specialist put me on bipolar medication, she has gradually begun to realize that it is a genuine diagnosis, and not some quack doctor(s) trying to push a diagnosis and treatment. Because of this, I have been talking to her more often about my physical problems too. She agrees with me (as does my SO) that while my physical symptoms may be influenced by what emotional/stress problems I am having, they are not actually psychosomatic in nature. Once again, I've been having a hard time getting a doctor to take me seriously. They tend to think that because I have a psychiatric problem, what I'm saying is going on physically is a result of that, or being made up, or exaggerated, or whatever. So, I'm hoping that having a direction to point them in would help in this matter.

After talking to my mother about my physical symptoms, she (who is actually rather knowledgeable in terms of medical problems, despite being in denial) seems to think that I have an autoimmune disorder. After reading a bit about them, I am inclined to agree, especially because of the joint pain that I have and frequent low-grade fevers -- and generally bad immune system. Also, I have yet to come across anything that sounds like what I have. Specifically, my mother believes that I have celiac disease (gluten allergy). Since then (a few weeks ago), I have been trying to see if there is a pattern in what the ingredients are, but so far I have seen none -- unless, of course, I eat something I already know I'm allergic to (which, yes, is stupid but sometimes cannot be avoided given everything I'm allergic to). In fact, the past few times I have gotten sick, I did not find any glutens in the ingredients.

Let's see... Other things of note... Currently (in the past year, more of less), I have been vomiting at least once a week, although I do have reprieves occasionally, and can't seem to find any pattern in them. Just as often, if not more so, I have diarrhea (sometimes constipation), and even more frequently (near-daily occurrence) nausea and general stomach upset. I almost always have a low-grade headache (I cannot remember the last time I was pain free) and frequently (a little less than once a week) have *really* bad headaches. I am fatigued, achy, having joint pain and stiffness, and overall not feeling so great. I was in a depressive swing, but now seem to be heading towards the manic side. I am not consistently on any medications as I am between doctors, but I have been taking Cymbalta 30mg and Geodon 20mg as needed, which has within the last month been about once every three days. I am having more frequent boughts of dizziness/lightheadedness/feeling like falling over, discoordination and confusion, and memory troubles, all of which may or may not be because of the medications. I also frequently take some sort of OTC muscle relaxer/pain killer, and just recently ran out of Ativan 1mg (as needed to control anxiety [and sucks without it]). I was regularly taking Zyrtec, but have not the past few days because I'm running low and havenít gone out to get more.

Things that may or may not have any bearing whatsoever on anything... I have very poor spatial and temporal concepts. I frequently lose track of time and what day it is. I get sick if I get too hot or am in the sun too long (not very long). I get cold frequently. I am very sensitive to light and sound -- too bright or too loud makes me physically ill. I wear glasses (nearsighted); I have trouble at times driving at night. I am married. I've never been pregnant. My current birth control choice is an Implanon. I am raising a service dog. I keep reptiles. I have patelofemoral pain disorder of the variety where the tendon doesn't fit in the groove properly.

I can't think of anything else. If you have even the slightest idea of what might be wrong, please tell me. If you have any questions that might help clarify this, please ask. If you have any suggestions, no matter how obscure, I will listen. I am desperate. I am tired of always being sick and in pain.

I realize that quite a few diagnoses might include mental health symptoms. While I am fairly certain that I am bipolar/OCD/anxiety ridden, I would still be more than willing to listen.

Please. Anything.

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Old 01-23-2009, 04:48 PM   #2
Senior Veteran
Join Date: Feb 2007
Location: Florida
Posts: 1,453
AuntieLeela HB UserAuntieLeela HB UserAuntieLeela HB UserAuntieLeela HB User
Re: Where do I start?

I have BP1 and celiac. I also had OCD and anxiety symptoms from a steroid medication I was taking for my arthritis. Cortisol, the hormonal equivalent of a steroid medication, can greatly effect the brain chemistry of people with bipolar disorder. Check your current medications for steroids. Ask your Pdoc about "steroid psychosis". Symptoms can range from mild anxiety to full blown OCD to florid psychosis.

Celiac is a autoimmune disease and not an allergy to gluten so unlike allergy the effects are often not immediate. Indeed many symptoms emerge from malnutrition which can take years to develop. Celiac has over 200 possible symptoms and some folks with celiac have no symptoms at all till late in life.

Besides the obvious gastrointestinal signs, celiac can cause joint pain, canker sores, an itchy rash called dermatitis herpetiformis, neurological signs like calcium deposits in the brain, migraine/headaches, moodiness, gluten ataxia (clumsiness), mental fogginess, seizures, numbness/tingling . . . . well, you've probably read up on this already! I'll spare you the whole two hundred! LOL. But you see what I mean.

Celiac can be initially diagnosed with blood tests (the "celiac panel") but in order for the tests to work you must be eating gluten. If the tests are positive or iffy, they'll do a small intestinal biopsy with an endoscope to confirm the diagnosis. There's also genetic testing but having the genes for celiac doesn't mean you have the disease.

I've found the medical community, who should be the most understanding, are far worse than anyone else with stigmatizing and stereotyping the mentally ill, especially if you have any history of anxiety disorder. Sad state of affairs but true. Contact your local NAMI for a StigmaBusters kit. (newsletter, how-to advice, local advocates, etc) It's not much but it's something.

I've come to recognize that passive agressive tone of voice - you know it - on the surface they're all sweet and sappy but underneath they're irritated and inpatient. Grrr. I hate wasting time (and money) like that. Outright discrimination can be reported: [url][/url]

Last edited by AuntieLeela; 01-23-2009 at 04:50 PM. Reason: spelling

Old 01-24-2009, 02:49 PM   #3
Join Date: Jan 2009
Posts: 4
GehyraVorax HB User
Re: Where do I start?

Thank you for the information. I will have to find a new doctor before I can request the proper bloodwork, though. I just recently moved and "in between" just about everything. To top that off, my pdoc ran off (moved, no forwarding address/number), so I'm kind of stranded all-around. I've been to the ER twice because of symptoms. They weren't that terribly helpful... I should know better.

As for my medications containing steroids, I'm not on anything right now. I was taking my "emergency supply" for a few days, but I've think I've taken an entire four doses. Other than that, I haven't taken anything in over a year, so I don't think it's that. It is something to think about though, and now that I know about it, I will try to be more conscious about it.

I guess I know that celiac isn't actully an allergy, but it just seelike the way to describe it to people. But, yea, I've been reading up on the symptoms. I think that maybe it's a good guess, but I'm not convinced either way. I haven't actually cut out eating gluten, I'm trying to look for it now to see if it coincides with any sickness I've been feeling.

I'll try finding the local NAMI community. Er, chapter. Like I said, we just moved, but I'm sure we're in a large enough area to actually have one. The last place I lived did not have one.

But, thank you. Information to consider. ^.^ Much better than anything I've gotten so far...

Old 01-24-2009, 07:59 PM   #4
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AuntieLeela HB UserAuntieLeela HB UserAuntieLeela HB UserAuntieLeela HB User
Re: Where do I start?

Celiac has so many symptoms it's impossible to diagnose, that's why they still do the biopsy to be sure.

Since you're starting out fresh, I'd suggest you try to find a doc associated with a teaching hospital, you're more likely to find real diagnosticians there, not just pill pushers or eye rollers.

Good luck!

Old 01-25-2009, 08:36 PM   #5
Join Date: Jan 2009
Posts: 4
GehyraVorax HB User
Re: Where do I start?

Nyrr, I'd love to find a doc at a teaching hospital, but there's not way I could afford it. I have no insurance...

Old 04-07-2009, 04:38 AM   #6
Join Date: Apr 2009
Location: frisco texas
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kendalln44 HB User
Re: Where do I start?

my younger brother has mental health care and he sometimes drives me crazy it makes me want to just have a bomb under me!!! he has to lay with me all the time he does'nt know how to do anything without me!.........he always wants me to do this stuff with him he's so fun sometimes and i sometimes do want to play with him cause he really i fun but what should i do about the carzy thing going on with him i really have no clue.....???? help

Old 04-07-2009, 07:25 AM   #7
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gardenandcats HB Usergardenandcats HB Usergardenandcats HB Usergardenandcats HB Usergardenandcats HB Usergardenandcats HB Usergardenandcats HB Usergardenandcats HB User
Re: Where do I start?

The bowel problems sounds like it could be crohns . fever and joint pain is
common .I suggest seeing.a gastrologist..

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