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margiebee

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Everything posted by margiebee

  1. As I have mentioned before, I am currently taking clorazepate, a benzo drug similar to Klonopin, to manage my symptoms. It really does nothing for my HR or BP but it does help me to feel better. I am in the process of weaning off, but it is a long process because if I lower too quickly I get bad symptoms. My doctor wants to get me started on some new meds that might help me. He mentioned Florinef and Propranolol specifically. Does anyone know if these are okay to take with a benzo drug, or has anyone actually taken this mixture? I know Propranolol is a beta blocker so I was wondering if that would be really sedating on top of a benzo. I do NOT need to be any more tired haha
  2. Most hair dyes give me headaches and mild skin reactions, any dizzy type reaction I've had I would attribute to the fact that dying my own hair requires me to stand up with my hands on my head for a long period of time. That being said, I would highly recommend the henna hair dyes from Lush. They still have a scent, but at least for me I do not find it irritating. Its just an herb-y type scent. They are fantastic for your hair as well. With how sensitive I am I just prefer to avoid chemicals with crazy names alltogether. Also if you can, what I do is find a helpful friend who wants to come have a "hair dying party" aka come apply dye to my hair while I sit down haha. I am 20 and already have gray hair so unfortunately I have deemed all this necessary
  3. I do have one friend who is very understanding about most things, so she has been understanding about this as well. I have lost some other friends because they think I am avoiding them or they think I am faking my illness. I actually use the "marathon" example most frequently, I try to expain that me standing has the same effect on my heart rate as someone running a marathon. This sometimes gets the point across, if people actually believe it. It just is seeming impossible right now to get everyone on the same page, including my workplace, family, friends, professors, etc.
  4. Even before I was diagnosed people would always tell me how cold my hands were, but my feet were always super warm. I never put 2 and 2 together at the time but I suppose this makes sense with my blood pooling. My hands and even my face are generally pretty cold to the touch, unless its hot out then they burn up.
  5. I have been drinking alot of fruit smoothies with kale or spinach mixed in, I think that's a good way to start out with the whole green smoothie/juicing thing because if you mix a bunch of kale into a fruit smoothie you honestly cannot taste it at all. I have been meaning to start experimenting with seeds and so forth. Any time I can hide healthy veggies in my food its a magical thing for me. Also I have used non-soy vegan protein powders before and had no problem, I try to stay away from whey and soy.
  6. I also have always had a ton of trouble napping, like I just can't fall asleep in the middle of the day. I do have a little trouble sleeping at night but nothing severe, but naps are borderline impossible no matter how tired I am Some days I wish I could just have a cup of coffee haha
  7. I have always had trouble juggling too many things at once. I don't often feel super fatigued, but I feel like I subconsciously know when I'm reaching my limit and only try to do a couple things in a day. But I go to school full time, as well as working a job in retail around 20 hours per week. I have gotten quite a bit of criticism from people around me about not being able to "just suck it up" and "work hard like a normal person". I feel like this is a pretty common frustration among people with illnesses like POTS, but its just so hard for me. I would like to do more things, I do not like feeling like I haven't accomplished anything and this gives me anxiety. I try to be social but after I get home from work and school I just can't find the energy to hang out with friends. This gets even worse when they think I'm just making it up and don't want to hang out with them. I am sure this is a common thing, and I was just wondering if anyone had any advice on how to cope with situations like this. Or if any of you have found anything to boost your energy without making your symptoms worse? Caffeine, even in tiny tiny doses is a no-go for me.
  8. When I am low on iron I lose my appetite pretty significantly, so I suppose it could just be her appetite rebounding back? I usually do not experience this until I am feeling well in other aspects as well but everyone is different and that could be the first thing coming back for her.
  9. I'm so surprised that it seems INFJ got the most! That's what I am, and although I do tend to surround myself with similar people so many of my friends are as well, I know its the "rare" type. I'm a pretty textbook INFJ, very idealistic, spiritual and intiutive. I also was very successful in school before I got POTS. Now people who don't know me too well tend to view me as a "slacker" because they can pick up on my intelligence but my grades/achievements in school do not match that intelligence level at all. Sort of illustrated by my extremely high SAT score but average GPA in high school. I don't think I was ever a perfectionist so to speak, although I am diagnosed OCD but that is nowhere near the same thing.
  10. I'm in the northeast ohio/cleveland area! there seems to be so many people on here from Ohio or states close to it
  11. Thank you all for your responses, so helpful! I have looked at some of the stuff going on at Mayo but I'm pretty confident in my doctor at the Clinic so far, he is a specialist for POTS and dysautonomia. My primary care doctor also treats several patients with POTS so he is at least familiar with the do's and donts. I'm hoping to at least figure out what's causing my POTS before I go for anything more than that
  12. I just get so scared of the trial and error with new drugs because when I react poorly, which i usually do, its really bad. of course. When I was tried on tricyclic antidepressants (horrible idea with POTS I know), I literally slept for 2 days. I could not even summon the energy to be awake. And that was after 2 doses haha. I am also considering trying licorice root, I'm all about the natural stuff.
  13. My therapist is wonderful, I have been seeing her since before my diagnosis with POTS and when I got my diagnosis she took time to research it and figure out how that plays into my mental health. I actually was diagnosed with panic disorder with OCD, but now we're fairly certain I just have OCD and the "panic" is pretty much all POTS. One thing that I think might help is to ask the doctor that is treating you if they refer patients to a particular therapist. Even though I started seeing my therapist before my POTS diagnosis, I was refered to her my my primary care doctor who was already suspecting something was wrong with my health. I think generally if other patients with chronic illness have recommended the therapist to your doctor it might be a better bet. Also my therapist works with a nutritionist, which is not only very convenient but I also think that its a sign that she is more experienced with physical health going along with mental health. And definitely be open to relaxation techniques, my therapist says mindfulness meditation helps loads of people who chronic illness. Good luck!
  14. Hope, I noticed your signature says that you have Oral Allergy Syndrome? My mother has something like that where she reacts to apples, pears, peaches, many fruits that grow on trees basically. So strange! Wonder if there is any correlation to POTS or if its just random And Krissy, I go to Dr. Jaeger too! He is very good, one of few doctors that have taken me seriously. Propranolol was actually one that was listed as something for me to try, but my primary care doctor is worried it may lower my BP too much so he is leaning more towards Florinef. Good luck on your tilt test, it is quite an experience haha
  15. I'm not sure if people do this often on this forum but I wanted to make a post introducing myself and seeing if anyone has similar experiences which I'm sure someone does! I am a college student from Ohio, and I have been dealing with POTS/dysautonomia symptoms since I hit puberty. Unfortunately in my case, as I'm sure many others, I did not recieve a diagnosis until this year, after about 7 years of symptoms. I had been told that I just had anxiety "or something" by many doctors, until finally I found a primary care doc at the Cleveland Clinic who realized something wasn't right and referred me to a specialist at the Clinic, specifically after I fainted in his office. They were measuring my blood pressure and heart rate around when I fainted and realized it was way off. Anyway, this year just a couple months ago I had the tilt table test and it did indeed show and increase in heart rate from around 70 supine to upwards of 140-150, it kept increasing for the entire 45 minutes I was standing and never stabilized. My blood pressure also dropped. My doctor said this is more or less diagnostic of orthostatic tachycardia or POTS, also mentioned dysautonomia given my other symptoms, but I am still new to all of this so its all a bit unclear to me. I am awaiting more testing which I will hopefully be having this summer to figure out what the factor is that is causing all of this, both of my doctors seem to think my venous pooling is pretty bad. Symptoms I have experienced through the years have been dizziness which is the most common/constant one, occasionally blacking out and fainting (I get tunnel vision frequently), exercise intolerance, gastrointestinal problems (got a diagnosis of IBS when I was younger), heat intolerance, palpitations. My younger brother has similar symptoms but less severe than mine. The only med I am currently using is Clorazepate, a benzo, which I am taking a low dose and tapering off of with little problem so far. I hope to try other meds but I am very sensitive to most medications. I am also currently using compression socks which do make a slight dent in some of my symptoms. I am glad to have found this forum and would welcome any insight!
  16. I have taken a similar benzo med (Clorazepate otherwise known as Tranxene) for about a year now. I was originally prescribed it before my diagnosis of POTS, but as it turns out it does help with many of my POTS symptoms. My daily dosage was fairly small, 7.5 mg which is equal to 0.25 mg clonazepam, but of course I am very sensitive to meds so I feel that this dosage was quite effective on my body. I have been taking it daily since around this time last year, but I have managed to taper down to half of my original dosage, so I am currently taking only 3.75 mg (=0.125 mg clonazepam). Initially the taper did cause some symptoms, which seemed more like a ramping up of my POTS than anything else. Lots of dizziness and bowel issues. But I have found that taking the taper very very slow has been successful for me so far. I am not sure if your son's neurologist would be okay with a slower taper (I cut 10% of dosage every 2 weeks), but for my sensitive system that was the best option for me. For the record I am weaning off of clorazepate because of similar daytime sleepiness issues, I do think these are good meds but the physical withdrawal aspect is unfortunate.
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