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Posts posted by Mistri_The_Squirrel

  1. On 6/11/2020 at 2:17 PM, KiminOrlando said:

    I looked this up on their website. It says it is for psychotropic meds. Does it do more than that? I keep randomly getting rashes but the Allergy & Immunology doctor doesn't think it is a true allergy. I am looking for a test that could identify a broad list of meds or triggers.

    @KiminOrlando  To my knowledge it is just for psychotropic meds. 

    I'm not aware of a test that will identify a broad range of possible triggers.  Doctors I've seen have not been terribly helpful, so I'm eliminating things from my diet to see what I may be sensitive to.  I've discovered that chocolate causes a lot of inflammation for me, and now I'm cutting out gluten to see if that helps.  I don't tend to get rashes, but I do have pain in my body.  I also discovered by accident that my depression improves when I have less inflammation.  (I had to take Aleve for a few weeks and felt better.  Then went off the Aleve and my depression went back to being pretty bad.)  So now I am trying to identify what things cause inflammation in my body.

  2. 3 hours ago, Pistol said:

    Also - recently someone posted that there is a test for medication tolerance that can tell which meds not to take, but I do not know about this test.  It might be worth asking your doctor about it. 

    @judyinthesky  It is called GeneSight, if you want to Google it and check out the website.  Not sure if I'm allowed to post a direct link to the site or not.

  3. @Pistol  Thank you.  Yes, she is doing much better.

    It did pass me by, thankfully.  When we were at the ER, the doc said he thought it was one of two viruses, both of which are extremely contagious.  He said one could have an incubation period of up to 7 days, so I was crossing my fingers for a week.

    My mom mostly stayed in her room and slept while I took care of her dog downstairs.  When I was around her, I wore a mask.  Was told to wash my hands a lot and disinfect things, so I did that.  And did not eat foods I knew she'd touched with her hands.

    Whatever she had was not mild.  The only time I've heard someone vomiting with such force and frequency was during an ER visit once.  And the moaning sounds she was making really alarmed me too, as I'd not heard that before from her.  I'm glad I took her when I did.  She was miserable, and I knew if it went on for too long I would have to call an ambulance.  

  4. Thank you so much for answering.  

    I took my mom to the ER last night because she had so much vomiting and diarrhea that she was weak and feeling like passing out.  I'm hoping I won't get what she had, but we'll see.

    I feel like having clear guidelines helps, because I don't think as clearly as I used to...especially when I am acutely ill with a bug.  And expecting my mother to know when to take me is too much to expect.

    Thanks again @Pistol


  5. My mother just came home from a trip and brought a bug with her.  She is vomiting and has diarrhea.  I started having diarrhea hours ago, but thought nothing of it, because POTS.

    I came back to her house to take care of her dog who needs medications several times a day, and she told me my grandmother had vomiting and diarrhea before she was visiting.  So am guessing this is viral and I will get it too.

    How do you know when it's time to get IV fluids when something like this happens?  I am not on any meds for my POTS (I should be, but that's a long story).  I'm not sure when to go get fluids or where to go.  The last time I called Dr. Grubb's office to ask, the nurse told me the ER is only for people who are on the floor dying.  I can't wait until I'm unable to retain consciousness to get fluids, you know? 

    Thank you.

  6. Yes.  I did get some relief working with a physical therapist.  She came up with several exercises for me to do that were tailored to my needs.  

    I think I should start doing them again, actually, because my balance is still bad on some days.

  7. On 5/2/2018 at 8:56 AM, Shannoncr said:

    I have experienced this my whole entire life. Still experiencing it now. 

    My mom has just recently become more concerned with the physical health portion of it because I have steadily declined in the last year, especially so the last six months. We have no answers. I have had a full cardio work up numerous times over the years with no real diagnosis. My symptoms have changed over time but the tachycardia, dizziness, fainting, exhaustion, shortness of breath (which I always just thought I was extremely out of shape lol) has remained. My cardiologist is wonderful but because of my history of anxiety, depression, and anorexia (I’ve been in recovery for seven years with a few slip ups but no relapses) she feels most of my symptoms are because of the depression and anxiety. However, my psychiatrist and therapist do not believe these are psychological symptoms (but I don’t know if they aren’t just saying this to appease me or if they really believe something is going on.) But I have been trained since I was a teenager that all of my problems are in my head and have a difficult time believing even myself. I also minimize everything. 

    I feel you & I’m listening. 



    Thank you, @Shannoncr.   ❤️  I hope you are able to find some relief.

    It is hard enough having to deal with this.  It's even harder when you are dealing with mental health problems.  

    It's as if the doctors believe we have some sort of immunity to physical illness.  I guess that's easier to swallow than the possibility that they don't know everything.

  8. 5 minutes ago, KiminOrlando said:

    I was on Cymbalta for a couple of years. The doctor advised me to stop rather abruptly and I had asked him about tapering too. I did exactly what he advised and didn't have a problem.

    Hope that makes you feel a little better. I can understand your concern though.

    Some people don't have a problem with it.  Others have a really hard time. 

    I decided to be extra cautious because of my history, and tapering slowly worked well for me. 

  9. My mother was told that she had osteopenia, despite the Boniva injections and supplements.  (She also drinks more milk than anyone else I know.)  After my dad died she had to start mowing the lawn, which meant she had to walk a lot (big yard).  After doing this for awhile (in addition to the other things), she was told that she no longer had osteopenia.  She credits the walking.

    Since many of us are unable to do a lot of walking or other weight-bearing exercises, I'm wondering if we are more likely to have bone density problems.

  10. My doctor gave me questionable advice regarding getting off the Cymbalta.  I was not going to start anything immediately after getting off of it, and he wanted me to be off of it within 10 days (after having taken it for a decade).  If I remember correctly, he wanted me to take one every other day, then suddenly stop taking it.  It made so much more sense to me to open the caps and "bead count" to lower the dose gradually. 

    I'm not saying I advocate going against what doctors tell you to do, I just know from years of getting on and off these meds that I was probably going to be sicker than necessary if I did what he said.  And I was the one who would be suffering if I followed his advice...not him.  He was probably going by what the drug manufacturer recommended, and the drug manufacturer has a vested interest in not admitting that discontinuation of their product can be problematic for some people.

    I get sick when I get on these meds and I get sick when I get off them.  The doctors always act like it's no big deal, but they are not the ones having to go through it.

  11. 13 hours ago, amj1156 said:

    I was also taking Pristiq when I was first diagnosed with POTS. It did nothing for my neuropathy pain. I tried Lyrica and Gabapentin. Lyrica worked for a month and then the pain came back. I also gained 25lbs in one month with the Lyrica. Gabapentin also caused me to rapidly gain weight. I then switched to Cymbalta which worked wonders for the neuropathy and my muscle and back pains. The Cymbalta didn't seem to help or hurt my POTS symptoms, and I was able to lose all the weight gained on Lyrica and Gabapentin.

    I was on Cymbalta for about a decade before I switched to Pristiq.  The Cymbalta wasn't doing enough for my depression and anxiety anymore.  I don't even know when the neuropathy started, because I was only aware of it after I stopped taking Cymbalta.  I gained about 60 lbs over the years I was on Cymbalta, which I am now losing.  The Pristiq does help with my neuropathy.  It doesn't take it away, but it makes it tolerable.

    I'm glad you posted about it though.  Maybe someone who hasn't tried it will happen upon this thread and realize they need to ask their doctor about it.  

    The only caveat I would add is that it can be a bear to discontinue.  I followed the advice on the Cymbalta Withdrawal site (to taper off rather than stop abruptly) and was able to taper off of it with minimal issues.  

  12. 2 hours ago, Clb75 said:

    I know, lol. I’m on several, so it’s been inconvenient when I’m trying to get my meds all at once. They did say that you can fill it earlier with a doctor’s authorization, I just haven’t tried it yet. 

    Really?  That's good.  Do you use one of the chain pharmacies?  I use Rite Aid.  Last time I checked they would let me fill my Klonopin prescription a few days early, but I don't know if that has changed.  I take less than I'm prescribed, so I have a little extra and don't necessarily need to refill it in a timely manner.  That's how I prefer to do things.   I have extra of everything I need so that I never have to run and get something when I'm not feeling up to it.

  13. 6 hours ago, Clb75 said:

    I’ve been on gabapentin for years, but it’s prescribed by a neurologist for a separate autoimmune disease I have that causes neuropathy. The only issue I have had is that the pharmacy will now only let me refill it every 29 days, where as before I could fill it a few days or even a week ahead of time. 


    That's pretty inconvenient for people who can't always get to the pharmacy as soon as they would like.  I'm sick of medications being so regulated.  Not everyone is an addict looking for a fix.  

  14. On 3/21/2018 at 6:29 PM, Clb75 said:

    Have you looked into gabapentin for neuropathy? It’s commonly used for it and may be helpful. 

    I just read that the government is looking to "crack down" on gabapentin like they have on opiods.  I hope this is not the case, because what are people supposed to do when they have no other option?

    My POTS specialist is a nurse practitioner who works under a doctor who is world-renowned.  I realize I'm not the most serious case they see, so maybe I don't matter as much, but I just want to know if there will be any options for the buzzing my my legs and burning in my feet if I switch from an SNRI to an SSRI, and she will not answer the question.   I got a response that all SSRIs and SNRIs work for POTS, but that isn't true.  Pristiq is making my POTS worse.  I don't know what to do next.

    The last time I saw my neurologist, I was told that my problem is anxiety.  But my tilt table test was positive, so...no.

    Who am I supposed to go to for help?  These doctors are no help at all.

  15. On 3/28/2018 at 12:38 AM, Lainy said:

    I hope it's not too bad for you. I was down for most of the day myself(recovering from yesterday) I feel like I ran a marathon and then followed it up with weightlifting when all I really did was clean. : /

    Roxy, the timer is a great idea. That's mostly my problem, too. I get on a roll and totally forget to even stop for water... even if it's right next to me. lol

    I wasn't too bad yesterday, until I had a pre-syncope episode when I was helping my mother move something.  Then I got tired, and I'm still tired...even though I took a 4-hour nap today.  :mellow: 

    How are you feeling?

  16. 17 hours ago, Abjadeya said:

    Thanks y'all! I have had extensive GI testing, because that's how my POTS started presenting itself at the beginning. I have done ever GI test out there - my latest were only last year - I have been cleared from Barett's thank god. My GI doctor was so fed up of me she put me on B12 and vitamin D supplements and sent me on my way. I have GERD; that's the only official GI diagnosis I got. Thank you for that @Mistri_The_Squirrel , i completely agree with you, which is why i kept persistently going back to the GI doctor.  I am terribly sorry about your dad. @Pistol I have been on nexium before, I will talk to my doctor about protonix. Right now, I take Tums but I am not sure how effective it is right now, but thats child's play. I didn't realize that GERD could actually be so degenerative, thank you both for making that clear. I am on Zofran as needed. 

    Thanks, @Abjadeya.  I'm glad to hear you are being so proactive and keeping on top of your symptoms.  It does sound like you might benefit from seeing a GI doctor who isn't "fed up" with you though.  I've found that once a healthcare professional seems to be exasperated, they become far less helpful.  It's like they shut down and write you off, and that is no good.  Wondering if your dysautonomia specialist (if you have one) knows of a GI doc who would be more helpful.  

  17. On 1/4/2013 at 1:18 AM, FarmerAmy said:


    My doctor didn't believe me when I said I was gaining weight due to the Cymbalta. I slowly gained about 10 lbs per year and he just said that we gain weight as we get older.

    I didn't include all the details in my first post, but I will now in case they are helpful. I gained 35 lbs over about 3 years while on Cymbalta. I stopped taking it at one point and lost 30 lbs in 3 months without even trying. Unfortunately I also went into a major depression and went back on the Cymbalta and gained back the 35 lbs in under a year. I switched to Zoloft and the weight started to slowly come off again and I am finally back to my normal weight.

    At first my doctor was adamant that Cymbalta does not cause weight gain. But I know my body and I've always been slim without trying. I tried to convince my doctor, but he was so certain that I began to doubt myself. Now that I've been through a few weight gain and loss cycles, my doctor says "of course it was the Cymbalta!" Luckily I think he is a good doctor, otherwise I would have found a new one after this experience.

    Your weight gain might be completely unrelated to Cymbalta. But you know your body best, so don't let your doctor make you doubt yourself if you feel strongly about this.

    Good luck!


    I was on Cymbalta for 10+ years and gained 60 lbs.  I got off it last year and have lost about 40 lbs without even trying.  I was actually going to post here and ask if my weight loss could be due to POTS, but it might just be from getting off the Cymbalta and being on Pristiq.   (My appetite is not what it was before I started the Pristiq).  

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