Discussions By Condition: I cannot get a diagnosis.

Help, I'm getting worse. I'm really worried.

Posted In: I cannot get a diagnosis. 34 Replies
  • Posted By: RachelBullets
  • May 27, 2008
  • 09:04 PM

What started out 10 months ago as severe abdominal pain and crippling headaches has gotten way worse.

The headaches do not respond to ANY medication, from Tylenol to Darvocet to Imitrex, nothing can kill the stabbing pain on the right side of my head. I get attacks where it gets worse and I can't do ANYTHING.

I'm still having nausea and vomiting episodes, not as much anymore. However, I'v lost 20 lbs. in two months without trying to do so.

I literally never know what day it is...I have to ask someone at least twice a day. And sometimes I can't read. Like, I write something or look at a word, and no matter how correctly I know its spelled, it looks like just a bunch of jumbled letters to me, not words. And I'm also having trouble spelling simple words like "about." Not common for someone who graduated high school with honors.

My ex boyfriend always yelled at me for constantly repeating myself.

One of the most alarming symptoms to me is I have started losing control of my bladder. It was just to the point where I would have to rush to the bathroom and barely make it, but I was working one day, ringing out a customer, and all of a sudden, I peed my pants. I went home and changed...it happened again that night.

What's going on?! I just want to know so I know how to fight this ****.

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34 Replies:

  • Hi Rachel.......first of all let me tell u a little bit about myself, dont worry im not going to give u all my woes, its just to let u know where im coming from. I suffer from Trigeminal Neuralgia but not in the typical way, so i know all about pain......ive been living with it a long time. Alot of the medication does not work & some have serious side effects. What medication are u taking ? some medication causes confusion, also some cause bladder problems, some cause muscles to relax, this then causes a weakness in the bladder. Look what i am going to tell u now u might scream & say it wont work & u want a pill to help it. Listen anyway & try, what have u got to loose. Firstly i stopped alot of medication, what i do take is amitripyln, baclofen(for spasms) and attenol (beta blockers) these are the ones that didnt wreck my head, but the baclofen is once again a muscle relaxant so can still cause bladder weakness (i do exercises now for this) Anyway, to the point of the pain, when it starts i get myself into the most comfortable position i can, propped up in bed, i relax every muscle in my body & i breath really deep calm breaths, i do this to ride the pain out. When i first started doing it it was hard to stay focoused so i started counting in my head when i loose count i start again. The strange thing was, when i started doing this i was able to shorten these attacks and the atttacks started to happen less. I call them attacks because the pain was so wicked, to say u had a sore head did not give a true description of how bad they where. Have u tryed accupunture ? please try this also it does help. The most important thing during ur pain is to make sure u breath right, get as much oxygen into ur lungs as calmly as u can.....believe me that is very very important as lack of oxygen will increase ur pain. Please try this Rachel, it will do you no harm & hopefully help, keep at it dont give up ! Let me know how u get on ! Best wishes :)
    Tootsie 628 Replies Flag this Response
  • Thanks. Right now I take birth control , lamictal, lithium, celexa and wellbutrin for psychiatric things. I was also on creon 10 to help me keep weight on, but it didn't work. I was also on Donnatal for the pain in my side. It made it tolerable, but not cured by any means. I just recently had an MRI done of my brain and some blood tests because I'm very anemic, and they've never tested my iron or B12. I also have to get an EEG because I'm having seizures and they don't know why. I haven't gotten the results of my MRI or lab tests yet, I'm trying to get my files transferred over to where I live and am having a hard time to get anyone in that office to give a ***n about it. I really want those results so we can know where to go next, at the very least.
    RachelBullets 120 Replies Flag this Response
  • Hi again Rachel, Ive been on lamictal myself in the past & had no problem with it. Lithium is a hard drug to be on but the other drugs i know nothing of, Willbutrin has been decussed here & im sure some members will know more about it than me. Have they been checking ur blood while on Lithium, this is very important that they do this. A very close friend of mine was being treated for severe depression, they tryed her on all kinds of meds, lithium included.......i watched her getting worse & worse & started to suspect that the medication was causing this. To cut a long story short she has now stopped all treatment under supervision i may add, the change in her is unbelievable, she's getting back to her old self. I'm not suggesting that u stop ur treatment but maybe it would be worth while talking to ur doctor regarding this. There was one drug they give me (Neuontin) & quite honestly it nearly put me out of my head, I stopped it instantly,I did talk to my doctor about it though & explained why i would not continue with it, i knew myself better than anyone......some drugs really are not right for some people.....these drugs can make u feel very ill. Talk to ur doctor & see what he says & explain how u feel ! Kind regards :)
    Tootsie 628 Replies Flag this Response
  • Yeah, I know its not any of my meds causing this. I actually went on them because being chronically ill was making me intensely depressed. I was sick 6 months before starting medication, maybe more. I know that the meds seem like a logical explanation, but I beg to differ. Honestly, at the rate things are beginning to happen to me, I don't think I'll live to see '09. My body is literally just beginning to constantly disfunction.
    RachelBullets 120 Replies Flag this Response
  • Right hun im going to say a little bit more then leave it as i dont want to over do labouring the point. I was ill before i was put on certain meds.....also my friend was also ill before certain meds. I have reread ur first post to see if i was missing anything. Everything u said in it could have been my story eg, confusion, bladder promlems, continually repeating myself, not being able to function at all & pain pain pain & more pain, exhausted, not being able to sleep......also i got to the stage i was preparing to die. Rachel what have u got to loose to rethink this, at worst u will be no worse off & at best maybe u will regain control again of ur health. Chronic illness & pain is deeply depressing & the so called cures can be worse. Rachel i beat this & because i beat it didnt mean that it was anything less than what u r going through. I still have TN i have learnt to cope with it, i control everything i possibly can in my life & refuse to lie down, I will not take any medication that alters mind & destroys soul......i refuse to be a victim of it ! I will approach everything with positive thoughts & basically think well. When i have bad days i give myself a break, tomorrow is always another day, it will be better......& so on. Look Rachel, hun its up to u i wont say anything more unless u ask me too. If i didnt believe that this could (possibly) be happening to you i wouldnt feel so passionate about it & have kept trying to get you to rethink this. Remember i have nothing to gain by this, all i want is for u to get better. Hun it up to you.......uve nothing to loose by trying out new things & new ways ! Kind Regards:)
    Tootsie 628 Replies Flag this Response
  • Thank you! That's how I've been doing...just keeping my chin up and fighting with every part of me. I don't want to let it get to me. I just want to know what it is so I can fight it even more.
    RachelBullets 120 Replies Flag this Response
  • Hospitalized again last night. I had an anxiety attack that led to what they think was a stress-induced seizure. But my potassium was also low, and I was having heart palpitations. I was semi-conscious some of the time, but I couldn't talk, just hear. I apparently stopped breathing, and they were getting ready to use the paddles. They were charging when I started breathing, I guess. I don't remember most of it, but I was told I was foaming at the mouth, gagging, and whatnot. I'm covered in bruises, and have 4 or so large, sore bumps on my head. I really don't see my life going much farther.
    RachelBullets 120 Replies Flag this Response
  • I found this on low potassium: Hi, here are a few things: Low Potassium Symptoms Usually symptoms of low potassium are mild. At times they can be vague. You may have more than one symptom involving the gastrointestinal (GI) tract, kidneys, muscles, heart, and nerves.Weakness, tiredness, or cramping in arm or leg muscles, sometimes severe enough to cause inability to move arms or legs due to weakness (much like a paralysis) Tingling or numbness Nausea or vomiting Abdominal cramping, bloating ConstipationPalpitations (feeling your heart beat irregularly) Passing large amounts of urine or feeling very thirsty most of the time Fainting due to low blood pressureAbnormal psychological behavior: depression, psychosis, delirium, confusion, or hallucinations. Here is something else: Also if I were you I would get my thyroid checked...you may have endocrine issues which include thryoid, ovarian hormones, adrenals to name a few. endocrinologist the specialist may be good to speak with.Here is some info on potassium and thryoid: POTASSIUM AND THYROID DISEASE "Studies show that potassium becomes very deficient in the hyperthyroid state. It can become so deficient that hypokalemic paralysis results. This is a condition in which the whole body becomes rigid because of potassium deficiency. There are reports in the literature of people found in a state of hypokalemic paralysis in the street. When they are taken to the hospital and revived with potassium infusions, they are often found to have hyperthyroidism. For an unknown reason this occurs at a higher rate among Asians. It may be genetic or dietetic (high sodium intake from soy sauce, perhaps??). There are indications that potassium deficiency may also be involved in hyperthyroidism and the rapid weight gain of hypos may be the result of potassium deficiency. The four minerals, sodium, potassium, calcium, and magnesium are next to each other in the Periodic Table and form a square on the left side. There are strong interactions between these four minerals. The balances between these four minerals seems to be critical to health and are probably very critical for thyroid health. Excess amounts or deficiencies of any one of the four may severely disrupt thyroid function. Additionally there seem to be interactions between these four minerals and copper and zinc, which are two metallic minerals with critical thyroid functions. It seems that a copper deficiency interferes with the proper functioning of both potassium and magnesium, and zinc seems more related to sodium and calcium metabolism. Also all of these minerals seem involved in either the production, degradation, or cellular response to thyroid hormone.Potassium, sodium, and lithium are alkaline minerals which are involved in the cellular pumps which regulate the transport of water and nutrients through the cell walls. There is evidence that a potassium deficiency can cause the cells to fill with water leading to an overall edema in the body. It's possible that edema of the brain cells from potassium deficiency may be involved in chronic headaches. It's also possible that potassium deficiency is responsible for the rapid increase in body weight seen in thyroid patients. This increase in body weight seems to occur despite calorie restriction and may be the result of swelling of all the body's cells with water. Indications of potassium deficiency include symptoms such as muscle weakness, which is a condition reported by many thyroid patients.You will also see below that eating licorice can deplete potassium with possible fatal consequences." Joan
    Joan5555 316 Replies Flag this Response
  • I also agree with Tootsie: you may have been sick before you went on all that stuff and they helped for a while...this is very very possible....BUT meds sometimes after a while can have the opposite effect...at least they did for me and I have seen this many, many times with BCP for one. In my own case, BCP, thryoid meds (which were not for me), even herbals like ginseng and others...all under doctors care....made me much worse in the end. ANd if you can believe this, for a UTI (which I mentioned in your case above) I drank cranberry juice...seems ok right? Just cranberry juice after all....but it has an effect...it is like medicine and I apparently drank too much trying to cure my UTI and I got very, very sick...threw up all one night, my UTI felt worse and I had flank pain which indicated kidney involvement....and this was just CRANBERRY JUICE!!!!! Some of us are very sensitive and I have tried many things to feel better and in the end it seems my body has a set point and does not want me to mess with it. Instead I handle it with healthy diet and living....more than that and my body get mad and gets even!. BCP in my case really really messed me up...I would get off that first if I were you...some folks don't realize that we are so individual and the many tyoes of BCP and they have varried effects and side effects....I thought I had MS it effected me so horribly!!!!!!!!! Seriously it was really, really horrible! Hormones...for me if at all possible I don't mess with them...if you do need help in hormonal area for health reasons try acupuncture....clinical studies show this can help in that area and you do have some symptoms of that....were you taknig BCP before all this started? Certainly your case is different than mine, but talk to your doctor..might be good idea to start fresh as you don't know what meds is causing problems and what is helping at this point......Joan
    Joan5555 316 Replies Flag this Response
  • Both replys well said Joan, I hope u are well.....:) Hi again Rachel, Sorry hun u feeling so bad. Im just going to say one more thing to you..........I had one seizure in my life & it was caused by meds.......& the funny thing is i very rarely admit to it, but it happend & was very destressing & scary. Can i ask you ur age ? Best wishes :)
    Tootsie 628 Replies Flag this Response
  • No, I began birth control several months after problems started, including the convulsions, headaches, so on. And my potassium isn't always low, only when I am vomitting more than I usually do, it happens to my sodium too. I just had a test on my thyroid, I just have to get the results. I thought I was only in the ER for an hour or two, but apparently it was ***n near 5 hours. I convulsed so bad, I broke on of the straps I was tied down with. They suggested I go to a neurologist, which I have to have an EEG anyways to rule out epilepsy. This was the first time anyone has ever told me I've foamed at the mouth. I'm 20.And this is the first time I could've died during one.
    RachelBullets 120 Replies Flag this Response
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  • Good Grief, Rachel! So sorry for all this! I hope you get to the bottom of all this...wish I could help more. Joan
    Joan5555 316 Replies Flag this Response
  • Hi again, Rachel it concerns be that u are so young to be on Lithium, that is a drug here in the UK that is used more as a last resort, doctors here are very reluctant to put people on it & if they do they are monitored very closely. Regarding some of the other drugs, im sorry i just dont know enough to comment on them. My daughter is 27, if she came home & told me they put her on lithium i would hit the roof. I'm sure for some it is appropriate & maybe it has its place but at 20yrs old it just doesn't seem right. Rachel anything we are telling u is from experience. Take care hun & i hope u feel better soon :)
    Tootsie 628 Replies Flag this Response
  • I thank you guys for all the help so far, I really do appreciate it, more than I can honestly expess, because any sort of ideas are helpful. :cool:
    RachelBullets 120 Replies Flag this Response
  • Hospitalized again last night. I had an anxiety attack that led to what they think was a stress-induced seizure. But my potassium was also low, and I was having heart palpitations. I was semi-conscious some of the time, but I couldn't talk, just hear. I apparently stopped breathing, and they were getting ready to use the paddles. They were charging when I started breathing, I guess. I don't remember most of it, but I was told I was foaming at the mouth, gagging, and whatnot. I'm covered in bruises, and have 4 or so large, sore bumps on my head. I really don't see my life going much farther. ohh.. Your post was worrisome to me as it made me think about something which happened to me early this year which i still dont know what happened (EEG didnt show up anything and doctors cant tell me what occurred). I was semi conscious (partly aware of what was going on), foaming at mouth (incident left my face covered with drawl), while having a seizure like eposide. (couldnt talk but would of been able to hear). I was alone when this eposide occurred. I didnt go to the hospital immediately after it.. as i was so so exhausted.. so immediately afterwards (with my head hurting slightly) then went to sleep. Till your post.. I hadnt even thought of the possibility of maybe stopping breathing too... scary :( (((hugs)))
    taniaaust1 2267 Replies Flag this Response
  • ohh.. Your post was worrisome to me as it made me think about something which happened to me early this year which i still dont know what happened (EEG didnt show up anything and doctors cant tell me what occurred). I was semi conscious (partly aware of what was going on), foaming at mouth (incident left my face covered with drawl), while having a seizure like eposide. (couldnt talk but would of been able to hear). I was alone when this eposide occurred. I didnt go to the hospital immediately after it.. as i was so so exhausted.. so immediately afterwards (with my head hurting slightly) then went to sleep. Till your post.. I hadnt even thought of the possibility of maybe stopping breathing too... scary :( (((hugs))) Wow, are you okay? Has it happened since?
    RachelBullets 120 Replies Flag this Response
  • ohh.. Your post was worrisome to me as it made me think about something which happened to me early this year which i still dont know what happened (EEG didnt show up anything and doctors cant tell me what occurred). I was semi conscious (partly aware of what was going on), foaming at mouth (incident left my face covered with drawl), while having a seizure like eposide. (couldnt talk but would of been able to hear). I was alone when this eposide occurred. I didnt go to the hospital immediately after it.. as i was so so exhausted.. so immediately afterwards (with my head hurting slightly) then went to sleep. Till your post.. I hadnt even thought of the possibility of maybe stopping breathing too... scary :( (((hugs))) Hi guys, thats the way it happened to me also Tania, I was home alone, it left me exhausted & afterwards i went to sleep. I saw the emergency doctors the next day, they told me to stop taking new meds immediatly which i did and it has never happens since. They done no tests on me at all at that time. When i told consultant who started me on these meds he didn't believe me. He said "That couldn't have happened" I also tryed to tell him (apart from the seizure) my brain was buzzing like i had a bubble bee inside my head, I couldn't think straight or function at all. When people where talking to me i couldn't comprehend what they where saying, I'd watch theyre lips move but nothing fitted together.....& i was having the most disturbing thoughts.... totally totally weird & very disturbing, totally out of character for me. I told very few people about it as some people think ur not right in the head when it comes to anything like that......dont know why but thats how it was. Once i got meds cleared out of my system i was ok again, stopped some other meds i was on also, got myself sorted & never looked back. Thats the shorter version......lol:D Anyway guys hope ur both ok & Rachel never give up hope ! Regards :)
    Tootsie 628 Replies Flag this Response
  • Wow, are you okay? Has it happened since? No.. that was the very last time i went unconciousness. (id been unconscious 2-3 times before that in the past year.. but that was the first and only time ive frothed at the month and like fitted or something). In my case thou, that had something to do with my CFS and over doing it.. i'd over exerted myself and then that occurred... it triggered whatever happened Ive had 3 EEG's now all up..and none of them have showed epilepsy or an issue (other than my brain misses one of it's brainwave states). On the subject of medication.. i wasnt on any at all when that happened. Tootsie.. Just before that happened to me.. a friend had caught me (as i'd started shaking and collapsed while trying to get to bed) so he carried and put me in bed, I then got him to leave.. He said that what he saw when i'd collapsed (before the bad eposide i had).. looked like a part epileptic fit..(he's got a daughter who has epilepsy and grand mal seizures) .. the drawling and shaking eposides and partial loss of consciousness thou happened just after he left. So after that incident i researched epilepsy..and interestingly found out after an epileptic seizure.. many epileptics get very very tired and also get a headache right afterwards, (which was the state i went into after the incident). I just now are very careful not to over do things and cause something like that reoccuring. It's scary knowing one is going unconcious and shaking uncontrollably.. but not being able to do anything about it.
    taniaaust1 2267 Replies Flag this Response
  • Oh yeah, I was exhausted. The orange juice with extra potassium they gave me, I couldn't even keep down. These things have been happening since before I was ever on meds, they just can't tell me what's wrong yet.
    RachelBullets 120 Replies Flag this Response
  • Have you been tested for celiacs disease (basically like gluten allergies) or other food allergies or even sensitivities? Some people are so sensitive to certain foods that even the tiny bit can set them off....it may not even happen right away but several days later. There are lists of foods that are typical for allergies and you may want to look this up if many of your problems (before all the meds) started with digestive issues. Again if I were you, talk to a doctor about getting the whole body back in tune and not just trying to "fix" this and that... had a young friend who went though rough time in HS and she was on all kind of stuff for depression and so forth...and never felt well, finally at about your age she and doctor decided to wean her off all the stuff...she never felt better and is not taking anything now....I think some women go through a really rough hormonal adjustment in their teans....and it CAN really effect the entire body. Go back to base one: list what your symptoms were BEFORE you started anything. It is possible that will contain a clue for you as to what you are really dealing with...it is possible that from the beginning you were not correctly diagnosed ...and now you are on many meds, each which has its own side-effect and it is hard to tell weather the "cure" is the problem or the "disease or allergy or whatever" is the problem. Talk to your doctor about this....do not do it on your own as some of those meds may require a slow reduction rather than all at once. FOr blood tests keep this in mind and talk to doctor: Your blood work now might also be thrown off by all the meds and certainly the BCP you are taking will throw some results off. So by blood tests it may be hard to see what is going on.....In my case I had high cholosterol problem: a raised cholesterol result, as one example, may be because of the MEDS...that was my case with BCP and though not a common side-effect it DOES happen and I had a "before and after" blood work so I KNOW it was the cause. In another example, thryoid meds that were supposed to help me raised liver counts and kidney blood results and a few others....sometimes these meds DO cause levels to be thrown off and then it looks like you have another problem when in fact it was the meds that was throwing the blood work off...in some cases it is that these results actually are only show your body ON the DRUG rather than showing what is really going on with the body....It happend with me and it is certainly worth bringin this up with your doctor...even if they get off a little bit, for you it may really effect you and a little bit here and there on this and that...seems like it can all add up.....I am a very sensitive person, so it happend a lot to me....my husband is much tougher does not happen to him...we are all different....DOCTORS SHOULD REALIZE THIS!!!You obviously need a good and caring doctor....I am not sure you have a good one yet and that may be your first duty is to find one that will work with you and help you get to the bottom of all this but in the end YOU have to take charge....good luck. Joan
    Joan5555 316 Replies Flag this Response
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