9 replies to this topic

[Duchykins]

I've been sick for years, with overlapping issues. Only real diagnosis I have right now is migraine. Just recently I think I may have pieced together a few things that may lead to a breakthrough, I'm hoping.

Not to long ago I had an overwhelming attack of what felt a little like anxiety but worse; palpitations, excessive urinating and insane thirst, burning, tingling and pulling in my legs, dry eyes, shaking, dizzy, breathing wrong, tired but unable to sit still or lie down due to feeling panicky. This happened about an hour after finishing off a Red Bull I had opened up earlier the day, drank half and put in the fridge. It was my first Red Bull in months, regular caffeine is on my migraine-avoid list. This episode was also precipitated by ridiculous salt and carb cravings, this has been happening nearly my entire life. I normally HATE any kind of spicy foods and hot peppers, but every once in a while I get very strong cravings for jarred pepperchinis, garlic-stuffed green olives. The previous few days I had been working my way through a new jar of pepperchinis, about two months since the previous pepperchini fit. I always guzzle water during these times, and usually eat the pepperchinis with plain calrose rice to help dull the bite (I know they're mild but my mouth doesn't tolerate hot foods well, which just makes this even weirder). I had always assumed my diet was deficient in something, possibly due to avoidance of migraine triggers, that prompted the cravings, and I usually felt all right after the binge, a little fatigued and irritable but that's "normal" in my life, so I didn't fight it much. At the time I was also right at the end of another 10-day brutal menstrual period which has been increasingly taxing on me over the past two years, I've been getting more and more lethargic with each one despite taking multis with iron.

Well I ended up calling an ambulance on myself when I almost passed out while sitting on the toilet. Medics gave me routine IV, I started to feel a tiny bit better at first, then my mouth suddenly went bone dry and I could barely form words, so then we all went to the hospital. The medic said I was in afib. It was a miracle I didn't pee in the ambulance, but they let me go right away as soon as they got me into the room. When I could speak I told them about the stuff I took that day and what I ate. That day it had been half dose of mag/calc/D3, small dose of taurine (500mg), small dose of lysine (500mg), theanine (100mg), 25mg P5P, half a multivitamin, 2 tsp Hershey's 100% cacao, 1/8 tsp mucuna 15% l-dopa ... same as the previous two days, with the usual ambien and theanine at bedtime

They kept asking me if I was on drugs (illegal). After being a migraineur for ten years, I'm almost used to doctors treating me like a drug addict though I've never been one and never ask for narcotic painkillers (they don't help anyway). They gave me some ativan while waiting for blood and urine tests to come back, and lectured me about energy drinks (which I deserved). I was a little better bit still in occasional afib after an hour, cold and shivering, they had my chest scanned. I could tell they were just waiting for the IV to finish so they could send me home, but then all the test results came back and the doc said I wasn't anemic and brought me some fat potassium pills. After about an hour and a half I was discharged, I could walk steady by then and was much calmer.

So I go home thinking wtf is wrong with me, did I almost kill myself or am I uncovering underlying problem I've had for some time? But that's went I remembered -- this same thing happend before a little more than a year ago. All the same symptoms. I had an abcessed toorh and had been up all night agaim, but all I had at the time was ibuprofen and excedrin . I was half insane from the pain and lack of sleep, I took 400mg doses of ibiuprofen every couple of hours until that same fit started happening but I thought I killed myself with ibuprofen so I called for a bus buth this time only took blood and urine, gave me a script for 20 norcos and to llay off the OTC painkillers for a while, and a reference to a dentist I couldn't afford

Tomorrow I have an appointment to have my IUD taken out, It's the copper-releasing one and I'm hoping it will help in some small way if it is no longer poking at me and causing nearly crippling bleeding, it's been there for 4 years and I'b been getting progressively sicker ever since

The week after that I have a follow-up visit with my doc, I don't communicate very we;; verbally and maybe if I had, she would have l
aready found diagnosis by now. What should I say to her

[Gerrans]

If something you took caused this, my guess would be a herb, because herbal products--mucuna beans, for example--are not remotely as well researched and regulated as regular drugs. It is just a possibility that one of the supplements you took had something horrible in it. I am a great believer in herbs, but they have given me occasional frights.

 

Glad you are doing better. You did right to call for help. And I think they were smart giving you potassium.

Edited by Gerrans, 20 May 2014 - 09:56 AM.

[Duchykins]

I keep feeling that similar weirdness at random times, ear ringing, fatigue with shallow breathing and heart fluttering, with dry eye and thirst, abdominal pain, that get better about an hour after taking a small amount of cream of tartar, up to 1/8th tsp (potassium bitartrate, about 500mg per tsp) and 1/8th tsp magnesium. I get a lot of energy back too. I stopped taking everything except calc/mag, taurine, cream of tartar, theanine until I go to the doctor because I don't want them coloring any tests she'll be ordering for me. I think some of the things I've been taking have been masking my symptoms which is why I've done so much better since before I started taking them around December-January. I don't have a lot of "herb" type of supplement and the ones I do take are irregular, this last week it was only a nighttime dose of bacopa for a few nights, and 1/8 tsp of mucuna most days (average dose is 1 tbsp for 15%)

Now that I know what to look for I realize I've been having symptoms of hypokalemia come and go together like this for years but they were dismissed as "depression" and "anxiety". I noticed that I feel the same symptoms coming on whenever I eat or drink something that has a mild diuretic effect like chocolate or artichoke, even though these have a fair potassium content. It also happens after eating red potatoes, I'm assuming the increase blood sugar is affecting potassium, even though potatoes have a good amount of potassium. If something is going to bother me I can now tell about an hour after consumption. Nicotine also brings the symptoms if vape heavily and I slack off on the small doses of potassium, magnesium and water every few hours. If I get a good amount of strawberries, banana, carrots, spinach, milk (soy or lactose free dairy) orange juice, peanut butter, peas then I find I can skip the cream of tartar for a while, which I try to do because the tartar is supposed to be mildly diuretic even though I haven't noticed it.

I think my past love affair with ibuprofen hurt my kidneys or contributed to an ongoing problem with my kidneys that began when I was 21. I used to take it often daily before I had medical insurance, now I almost never take it... but the night before I called the ambulance on myself I took only 400mg for the back and leg aches I was getting with my period and it made me really tired and slow. My 21st year was a nightmare, my migraines began, then I had a series of ugly kidney infections, the first one lasting more than a month before I went to the hospital because I had no insurance, next to no money and didn't know what to do other than drink cranberry and orange juice, but the pain was getting so that I could barely sleep, walk or work. They told me my kidneys were about to shut down and scolded me for waiting so long. Over the next two years I had to go back for Cipro 4 more times. The only things I took back then were Excedrin and the occasional cranberry pill since the juice was giving me migraines. By that point I was very conscientious about my kidney health and altered my diet as best I could to take it easy on them. After those two years I had no more infections, but my energy and general health began declining very slowly and gradually, I blamed the migraines but now I realize it could have also been my weakened kidneys. I didn't know about supplements until about a year ago when I got real insurance and *really* started trying to get well. I'm almost 32 now.

Edited by Duchykins, 20 May 2014 - 04:40 PM.

[Gerrans]

I can never resist chiming in with my halfpenny suggestions to people, but really your issues are well beyond my experience or knowledge.

 

I do have a few kidney problems of my own, and all I will say is that I have reduced the pains by various methods of keeping my pH normal. I do this by testing my urine every so often with a pH strip--and then I may take various things to get my pH back up if necessary--for example, potassium bicarbonate, which is much cheaper than potassium citrate and probably does the same job. Controlling my kidney issues has helped with a range of other syndromes that might be related--for example, oral pains (abscesses, tooth decay, mouth ulcers, etc., might be kept at bay with a neutral mouth pH, I think), gout, arthritis, chilblains. (I get fewer migraines, too, but I do not know if that is connected.)

 

It is not straightforward, because sodium osmolality, etc., is multi-complex. It seems you are having episodes of losing water. The consequent loss of sodium triggers the renin-angiotensin-aldosterone system to then make you regain sodium to compensate--and this forces potassium out under diuretic pressure, because the two are linked by a seesaw mechanism. (And, unlike with sodium, the body is not equipped with a potassium-retention reflex--presumably because it assumes plenty.) The best thing I can think of is to make sure you are kept topped up with all electrolytes simultaneously (a sudden shortage of one or other is probably more likely the issue rather than an excess).

 

Please ignore my random theorising if you think it unhelpful.

Edited by Gerrans, 20 May 2014 - 05:52 PM.

[Duchykins]

No, it's not unhelpful, you're definitely speaking my language here, and I appreciate you taking the time to talk to me. If it wasn't for people telling their stories, then I wouldn't have been able to piece together some of the puzzle.

ParaGard came out today. Relief. The doctor told me to take ibuprofen, she's only the 50th doctor to tell me to take ibuprofen. I told her about ibuprofen's relationship with renal tubular acidosis and that I have almost every symptom of it, and the history for it. She said that would make sense considering my anxiety, coldness and how long it took them to work a few drops of blood out of my finger for an HIV test. She also told me to get a script from my GP for a beta blocker like propranolol, because of the panic attacks I get whenever I have some invasive procedure (PAP smear, dentist, IV, etc). I probably won't relay that to my doctor because I don't want to put ideas into her head. I learned I had lost about ten pounds since my last doctor visit a month ago, which had been preceeded by another 10 lbs loss at the visit before that and another before that, totalling about 30 lbs lost over the past 5 months .... unsure if good or bad because I'm not trying to lose weight... I don't even own a scale. I do feel a lot less bloated though, so probably that's good if the bloat was from a being in a state of high sodium, low potassium, low magnesium. I am still having upper left quadrant pain coming and going, feels like pancreatitis, but with a little pain on the right side as well. Tinnitus, occasional trouble with visual acuity, dryness. I don't sweet very much anymore no matter how much water I drink. I have no financial choice but to wait until my appointment on the 29th but don't know if it's wise to wait that long to get some tests done.

I'm thirsting for the pepperchinis in the fridge. So stupid, I know it's going to make me sick. I should throw them away since their mere presence in the house calls to me like a pack of cigarettes sitting out on the counter. Yeah ... rereading that helped me make up my mind, I just flushed them down the toilet.

Sorry for rambling, but thanks for reading. Feel free to chimes in with whatever comments or criticism you feel like

Edited by Duchykins, 21 May 2014 - 04:27 AM.

[Gerrans]

Interesting you mention the coldness: I get that too. Still do not grasp what that has to do with the kidneys, but it clearly does. I have done much better with body heat since I became pH/potassium aware--got through the last two winters pretty well, but I am not cured. For example, was sitting in the burning sun the other day with ice cold feet! Three winters ago I had chilblains on all my toes for four months, with more coming and going on my fingers, ears and nose. My young doctor was bewildered. Since then I have been eating a high-carb, high potassium diet, which I think has helped.

 

Potassium is a weird thing, though. The amount in a potato or a banana hardly scratches the surface of what we need. But too much makes me go numb. Half a level teaspoon of potassium bicarbonate seems to sort me out just right, but I go heavy on the magnesium. I do not eat processed food these days, but I am not afraid to put salt on my food, because I think a full electrolyte mix is best for kidney stuff, and let the body decide what it needs.

 

I hope you do not lose weight too fast, because, for some reason, weightloss correlates with kidney issues, etc. For instance, someone with crystals in the tubules may have more pain if the kidney shrinks around them.

 

Best of luck. It is no picnic, I know.

[Duchykins]

The coldness is related to the electrolyte imbalance.

I read that high carb diets can be a cause or contributor of RTA and low potassium, which would make sense of why I felt shitter after eating some little red potatoes And for several years now I've had a fairly high carb diet just by keeping with "safe" foods that I knew wouldn't trigger migraines or give me diarrhea. I feel wrong and heavy if I have a high protein meal, or red meat... can't really describe it well. Chicken and turkey are okay, and swai, cod, but not salmon, tuna or crab... I knew it was wrong to have a diet so restricted like that but I didn't know what else to do, almost every time I tried to make a change I felt worse, and people would tell me I'm "detoxing" but that detox nonsense only holds for people who have an actual toxicity emergency and they go to the doctor, and I never had a diet with a bunch of stuff like soda, junk food, I've always had habits of reaching for carrots, cucumber, sprouts etc instead of potato chips since I was a kid, and my 4 year old is the same way, she'll beg for baby carrots, broccoli, seaweed before cookies or candy.

I don't know about the weight loss, it seems a lot of it was water, I still have a body good enough to wear my old lifeguard swim suit. I'm hoping that's all it was.

Still having salt cravings so I decided to try your way and put a bit of sea salt to my morning glass of 1/4th tsp of 1:1 calc/mag citrate, 1/8th tsp potassium bitartrate, 200mg taurine, and broke open a 600mg capsule of NAC to get roughly 200mg from it, about 200mg of beta alanine, 1/8tsp Emerald Balance and mucuna... waited an hour to eat a peanut butter and apricot jam sandwich (my favorite). Skipped multivitamin because it has extra shit I don't want right now. Felt pretty awesome for the rest of the morning, and I'm not constipated anymore. My ears keep ringing though, I wonder if that's because I'm not taking enough, I am still taking low doses of everything ... but I'm more scared of overdoing the potassium and calcium without knowing *for sure* from the doctor what the diagnosis is.

The ear ringing could be related to low GABA though, it's something I've had coming and going for years, and it got way worse a recent episode of ambien withdrawal (I have ambien back) and now I've stopped most of my GABA help except theanine and taurine. I guess I could take 30mg of picamilon or a lil more beta alanine and see if that has any effect on the tinnitus. Maybe I shouldn't have skipped bacopa last night.

Thanks for still talking to me, it helps make it less scary.

[Duchykins]

Feeling so much better the past several days! Upper abdominal pain ghosted away as if it were never there. Breathing feels easier and unconscious, I still get periods of shallow or paused breathing but that just tells me it's time for another swig of my drink. Same for ear ringing and dryness. I added a bit of potassium chloride as salt substitute just to try it out. Tried pure coconut water and promptly spit it out, stuff tastes horrible. I've always hated the tasted of coconut products (except the sugar which doesn't taste like coconut) If I buy the water again I'll make sure to put something in it to make it more palatable. This makes me hopeful that whatever the ibuprofen did to my kidneys is reversible.

[Duchykins]

My arrhythmia seems to have been resolved. My blood was drawn yesterday, they're running almost a dozen tests on my lipids, thyroid, kidneys, inflammation, liver... but I think my electrolyte crisis has passed. It was a 12 hour fasting test and I walked all the way there with no breathing trouble or palpitations or pain under my ribs, where just a few days before just strolling through the grocery store had my heart flipping over a couple of times. The initial quick test of electrolytes showed no abnormalities this time and my blood pressure was shockingly a healthier 120/80, very different from the usual 90/50 I've had for most of my life and probably contributor to my vulnerability to vasodilatory migraines. I got more potassium citrate though, I think it's more effective than the bitartrate with less diuretic effects.


I started noticing that I was beginning to feel just fine during the day, but the depressed breathing and apnea-like pauses started coming on close to bedtime and during sleep several nights. More potassium and magnesium did nothing to help this time. Last night was the worst, it was full on sleep apnea but I was tense all over my chest, which doesn't jive with sleep apnea. It made me half-jump out of bed from a dead sleep at 3am. It was very similar to the sleep troubles I had when taking ibuprofen. I had had a really good day so I was pissed that everything suddenly went to shit, and confused because I had taken nothing in the past two days but potassium/magnesium, 100mg theanine x2/day and one bacopa 500mg capsule at night... I went through my drug notes and I remembered too late ... bacopa contains a natural acetylcholinerase inhibitor. DAMMIT. My regular diet has many moderate-high choline foods like quinoa and so I have little use for supplemental cholinergics even with racetams. Then I realized I slept better on nights I didn't take bacopa. So I took some bupropion, the only thing around that I knew for sure was mildly anticholinergic as well as being a norepinephrine reuptake inhibitor and was able to breathe much easier and sleep about an hour later, around 6am.

Can't believe bacopa almost did me in like that... feel so stupid right now, but at the same time better because my anhedonia is lifting a bit and my sex drive is coming back...

Edited by Duchykins, 01 June 2014 - 05:11 AM.

[Duchykins]

The real test will be caffeine I think. Maybe tomorrow I will be brave enough to try some tea.