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kewi

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  1. Hi all, I'm new to the forum - My overview, feel free to skip to the question at the bottom! - I've been a nephrology patient since the age of 14 - I'm 22 now. I had a previous hx of frequent kidney infections and was finally referred to a specialist where I discovered I had bilateral reflux into my kidneys - I had the deflux procedure done at 17, and then at 19 came back with recurrent infections and discovered I had large stones in my kidney. I had those removed and have been on propholactic antibiotics, diuretics, and potassium supplements since. I was constantly complaining to different nephrologists (including one at Mayo) that I'm so tired, I don't want to go out with friends, I had chronic daily pain in my back, and I had blood in my urine still on occasion without infection. I even broke down in his office crying about it. I think that my fatigue was written off with my other symptoms. The first time I passed out I went to the ER and was dx with a kidney infection, after that every time it happened I assumed it was just my kidneys again. I eventually passed out during a clinical for school (I'm a nursing student), they called a code over the hospital so several doctors responded - I have to say that was the longest I've been completely out, I had a full staff around me while I lay on the floor, a pillow under my head, and a blood pressure cuff on before regaining any conciousness. The doctor responding suggested I get a full cardiac workup, I was surprised, but I did. I had a holter showing tachycardia, some PVC, some SVT - but otherwise pretty normal. From that point I had a TTT (positive), Treadmill stress test (My BP dropped 8 minutes in and I nearly passed out), Echo was fine, and ended up getting a cardiac catheterization which showed normal coronary arteries. I had these tests done by a cardiologist, he placed me on 25mg of metoprolol, but when I was still complaining of blackouts upon standing he refferred me to an EP who added midodrine. ** My cardiologist told me I have NCS/Tachy/Orthostatic intolerance- After reading about symptoms of POTS and checking off majority of all of them, I printed the information from this site and brought it with me to my next appointment. I asked him if he heard of it and he said he had. He then told me basically that I have that, and it's all basically orthostatic intolerance? When I went to the EP, the nurse was VERY helpful as she has NCS .. but we never discussed POTS Could someone please explain to me if there is any benefit to actually being labeled with POTS vs NCS/IST/Orthostatic intolerance, would my treatment be any different? Also, should I be seeing a neurologist? I'm new to all of this, but because my insurance deductible has been met for the year I would like to get any testing done that might be beneficial for continuation of treatment before the end of the year.
  2. Just started about 10 days ago. It's making a huge difference but the scalp tingling is definitely there. It feels like I'm always just about to get the shivers on my scalp, especially if I touch it. I also have constant goosebumps ... It's worth the side effects thus far, but I think I could benefit from 3 xday vs 2, I can feel it wearing off by the afternoon.
  3. What state do you live in? Here in Wisconsin we have an insurance company called "HIRSP". It is by no means free, but its available to high risk patients who would normally be turned down for other insurance due to pre-existing conditions. It's basically a big group plan you can join to keep insurance costs down rather than private insurance, but you have to qualify through certain health circumstances. You should see if your area has something similar. I didn't qualify unfortunately, because you have to have been without insurance for 6 months first ( my parents are keeping me on theirs until graduate) but the people on their phone line were very helpful, you could probably even call them and ask! As for your symptoms, I'm so new to POTS I dont know, but being a long time nephrology/urology patient I can tell you the testing for bladder retention is very easy and it seems silly your doctor woildnt just order it knowing your symptoms. Im sorry. But look up "bladder scan" they have one that's a bladder flow study too. I had mine done at Mayo, what they did was have you come in with a full bladder - you go to the bathroom on a special toilet that records your flow the whole time, then once you feel you've emptied your bladder, a nurse scans your abdomen and is able to record the amount of urine remaining. Overall it takes about 5 minutes and in your case sounds like it would absolutely back up your feelings.
  4. I'm on nuvaring, I'm able to have a period only every 3-4 months this way by just skipping my "ring-free" week. My gp said I really only need to have one every 6 months. Personally, that seems too long for my comfort level. I have not discussed bc with my EP, but I was off my bc last month and obviously got my period during that time ... Worst week I had in a long time - my heart rate was going from 70-120+ back to 70 within 30 seconds, shakey, dizzy, etc. I almost think I'm better off on it, at least then I have a steady regulation of hormones.
  5. Has anyone heard of high vitamin D levels? My nephrologist just tested these for my kidney stone issues and my levels were very elevated, he informed me that I cannot take supplements containing D .. will be going for another blood test within 2 weeks for this..
  6. I'm glad you posted this, I'm also a nursing student and was searching for the same answers! Waking up at 5am for clinicals following a day of work and late-night studying is really starting to get me. I LOVE coffee, but my EP says no more caffeine. He is definitely right (unfortunately), I have significantly fewer mornings of crazy palpitations since cutting out coffee/tea/soda - I'm two weeks without so far! Now I'm also searching for that replacement! I have recently started Midodrine 5mg upon waking and 5mg five hours later. For me, it feels although it's really helping my morning clumsiness and out of body sensations - but not as much with general body energy. My limbs still feel 100lbs each many days. I hope you find the combination that works for you, I'll have to keep checking back on your question myself to see what others do for a boost!
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