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Tammy

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Everything posted by Tammy

  1. Mine does this when my thyroid level dips... even by the tiniest amount as I'm hypersensative to thyroid levels. When I was diagnosed with a thyroid problem, my level was a 5.5 tsh and the doctor said he would consider it in the normal range, but because my family has a history of thyroid conditions, he decided to prescribe meds for it. Huge difference. My hair didn't fall out anymore. I usually try to stay between a 3 and 3.5 tsh, as any higher and my dysautonomia gets worse in a hyperadrenegic way. Any lower, like 4.5 - 6 and my hair will start falling out again and I will get very POTSY in a non-hyperadrenegic way. Having thyroid disorder and Dysautonomia is a bad combination and having hair fall out is minor but it ***** to have to clean up and see our scalps show through. I also have very dark brown hair that is long and thick, but have gone through phases when it has gotten thin, but when my throid levels are where MY body needs them to be, it grows back in. So if your doctor has tested your TSH and said it's in the normal range, maybe for the lab tests it is, but for YOUR body, it isn't.
  2. I really think the antibiotic might help. I think it has to be very low dose over a long period of time for best results, but however his doctor feels will work is worth trying Hoping for good results for your son.
  3. I think this is one of those things that depends on heart condition, etc. Also hyperadrenegic form versus non-hyperadrenegic. My cardio has told me to never drink coffee or any products with caffeine, including chocolate, etc. It really varies by person, but yes, I've read that for heatlhy individual without heart rhythm problems, a small amount of coffee is good.
  4. I'm not sure how cool your environment is, but in the winters here, I have to be so careful not to get too cold or else my body temp also drops and I get almost stiff or at least feel like I can't move my body. I was at a Christmas party last year with my husband's family and I was there for 3 hours (too long for me) and the room was about 65 degrees. When we got home my husband took my temp and it was 94 degrees and my extermities where 67 degrees. Felt like a fish!
  5. Hi! Ever since seeing the post about how most people with POTS can walk and walk, I've been feeling so bummed. I had always thought that most of us where unable to do much and walking was included in that. Now I'm not sure where I fit in and who really understand what it's like to live being homebound and confined to a recliner/bed most of the day. Sorry, just feeling really alone in this.
  6. Basically most of the time I feel too sick and am too weak to handle any family things. My husband ends up taking our child with him to family doings by himself. If I am able to, I try to go for a little bit until my body gets so weak I can barely move and than I leave and go home again. We limit trick or treating to only a few houses as that is all I can tolerate getting in and out of the car before I feel so faint and sick, I have to go home and rest.
  7. Okay, weird thing is I don't fit into this category. Not sure why. I get super short of breath when I walk for more than a few minutes and I start seeing 'stars" and feel oxygen deprived too. Not sure why my body does this???
  8. Yup, it can. I had a normal TTT but my electrophysiologist based my diagnosis on all my other symptoms. However, when I do a poor man's test at home, it shows a major jump in heart rate from laying to standing and my heart rate will stay high and my pulse pressure narrows at the same time, as if my body is running super lean, like a car that isn't getting enough fuel to it's engine. I have swollen lymphs in my neck too and many symptoms of CFS but my physician doesn't want to add that to my POTS diagnosis as he feels CFS isn't actually an illness, so we just focus on POTS. Take care.
  9. Erika, You have my support as much as I can give as I'm feeling so unwell right now also. I think it is so hard for us to just let others live their lives while we watch it go by. I think men especially need their time with the 'boys' and doing guy things. They need plenty of space too. It's all about what you can accept. Maybe just having him there as a friend would help. Would he be willing to do that for you? Do you live in an area that has access to programs that have volunteers that would help do your shopping and taking you out for appts, etc. Stress is so bad for us. I would definitely contact your doctor and if you don't already have meds to help with this, like Xanax or Klonopin, I would ask about it. Also vitamin B's help with stress. The sooner you find meds to calm down your over-stressed system the quicker it can recover (at least as much as our bodies have the ability to do and return to a level of previous functioning - being in bed, but not all the nasty stress symptoms, etc.) Also getting massages, if you can find someone who will come to your home once a week right now, can relax your nervous system. Or depending on your kids ages, they might be able to rub your back and help some. Whatever you find soothing and relaxing is what you need to focus on right now. Take care, Tammy
  10. Okay, here's what I've done to deal with how frustrated I would get by that type of comment. First of all, our illness is not contagious like people who are told to not go into work because they are sick. Therefore, it is more of a comment that is selfish in nature, as no one else wants to get sick and also prevent those like us who have a hard time with virus' ontop of our illness from catching one. Now for how I cope with a comment as such. In my mind, I clarify that me being sick is different than being 'viral'. I will literally state that I feel "viral' if I'm catching something, or that "I feel sick" if my symptoms are really bad. When I was able to work at the beginning of my POTS diagnosis, my co-workers understood how I referred to this and it seemed to be a respectful way for them to understand and helpful for me to not feel like it was a chip on my shoulders. Hope this helps others to see these types of comments in a positive light.
  11. Sleep is so important to the autonomic nervous system. My neurologist actually recommended using Ambien as needed (not for every night but let's say you don't sleep well every night... so then you might plan on taking it every third night to get some sleep and so on. ) He understand Dysautonomia very well and stated that symptoms only will get worse if you try to push yourself through it. It's actually better to take a sleep medication, as long as you are not taking something else that would be contradicted with it.l Hope you can get a good night sleep soon.
  12. I'm trying to learn to say I'm doing great. Most people just want to hear positive things and want to surround themselves with optomistic people. BUT it is so hard and I still at times give in to complaint when I'm feeling so deathly sick.
  13. I take mine right away in the morning. You should also wait at least an hour before eating food.
  14. Personally SSRI's are awful for me, but some POTS people have found them useful. Lexapro was one of the first meds prescribed to me before I was diagnosed and the doctor at the time thought I just had anxiety. It just made things worse for me. As with all meds, every person reacts differently. However, trying a super, super low dose rather than a normal dose may be a better idea. All the meds that I remember from when I first got sick, I hadn't realized how sensative my body is to dosage, so maybe I reacted badly because of too high of a dose that is normal for most people.
  15. I haven't been able to tolerate a movie for years. Yes, the noise/sound, sitting without having me legs up, etc. are almost impossible for me. Renting movies are so much more economical anyways, so I've learned to just accept it and enjoy them from my livingroom
  16. Yes, I'm always wanting to find someone who I'd get along with really well who also has similar symptoms as mine and is limited in their ability to socialize. However, I have yet to meet such a person. I'm scared to meet someone with POTS who is higher functioning because then I'd lose crediability because then people would wonder why they are able to do stuff and I can't. So I really am unsure what I want in the 'friend' department. Sometimes I'm too sick to care that I'm forgotten about, other times I feel fairly well, so than I feel bad about all that I miss out on.
  17. Well, for the first time in 3 years, it was cool enough and not too sunny out, so I decided to tag along with the family to the parade. I brought my reclining chair and we parked right where we sat. I stayed in the shade. I drank plent fluids for the enitre 2 hours. Basically did everything I could so I'd be somewhat okay. Well, I did okay, but just from those 2 hours of being out of the house, I'm exhausted and feeling a delayed sensory thing going on. Does anyone here get a sensory overload or something like this from being around noice, etc. I'm not sure what it is but it feels like my body is buzzing or vibrating, kind of shaking - but on the inside, not something you can see or feel on the outside. I can't explain it. I'm not sure if there's something that helps this or just try to get a nap in and see if that resets my body some. Any helpful ideas or understanding of this sensation would be great - Tammy
  18. Oh I am so relieved to read a post on someone who understand exactly what I go through when I try to do any little sort of thing, like a small shopping errand. This same thing just happend to me yesterday and someone knew me and stopped to talk. She's telling me how 'good' I'm looking, as I'm feeling like I'm about to fall over right there! She's asking me how I'm doing and about my daughter, etc. The entire time I'm thinking how weak I'm feeling and that I need to sit down but there's no where to do so. FINALLY, she says she has to get going and I BOLT out to my car and just rest for a long time before I drive home (only 3 miles away as I'm not able to drive far either). So I tell myself that it will be a long time before I try that again. Well than today I see a garage sale in our neighborhood. So okay, I can drive there, it's close. Well there are so many cute things for my little girl, and everything is 50 cents. So of course, I load up my arms (ya, I know - bad idea!!!!) and within a minute I feel weak, dizzy, sweaty, and I'm ready to drop everything and run, but knowing that my daughter needs clothes, I carefully and very slowly make my way over to pay for the stuff. Thankfully I was about 2 blocks from home, but I know that just getting excited about the great deal I had found and also the weight of the clothing was what flared me. It's just so embarrasing and frustrating at the same time. Thanks for sharing your story and hope my story helps you feel some company in this miserable illness we have
  19. Oh don't you hate it when you eat something unsuspectingly that comes back to get ya! I'm so leary about everything I eat and than, BAM, out of the blue I have a reaction to a preservative or spice, etc. and all **** breaks loose for a few hours. Lovely! I'll watch out for this one too... thanks for the warning
  20. Typically this is related to antidepressants. However, there are people who are sensative to electricity. I can't remember what it's called but that is possible. I think they did a Mystery Diagnosis once on a lady who was basically allergic to electricity, but I can't remember what her symptoms were.
  21. Not diagnosed with Pheo but have been tested for it a few times. For whatever reason, when I explain my symptoms, it's kind of the first test doctors seem to want to do. Oh well, guess it's just POTS being POTS
  22. Yes, I have the same thing going on. My glucous is fine but my insilin levels are low. I think that falls into insilin resistance, but not sure??? However, I've had a pretty strong sweet tooth most of my life, so not sure if there is a connection to that
  23. Suzy, I'm curious how they tested you for this gene that doesn't allow your body to metabolize medications properly. Is it just a blood test they do? I've always wondered if my body just can't metabolize meds right or if my liver has issues with them, etc. So when you find the information as to what it's called, let me know also. Thanks
  24. I can say that this runs in my mom's side of the family and it's never been something they can't pin point. It gets diagnosed and patients are put on oxygen and meds. The symptoms are a bit different than POTS. I can relate to their weakness and a few of the symptoms but it is different than what POTS patients present with. Hope this helps relieve some worries on Pulmonary Hypertention.
  25. Hi Cordelia, I'm so sorry that your symptoms are so bad right now. I totally understand what you are experiencing. I also want to agree with the idea of trying to pin point the things that make your symptoms even worse. For example, today I had something with corn syrup in the ingredients and now I'm feeling so unwell and I know that what I ate made it all worse. It won't take away all your symptoms, but making a diary of everything you eat, and noting the weather, if you were under stress, anything you ate with preservatives (msg, nitrates, sodium benzote, artificial sweetners, etc.), high sugar foods, seasonings on foods can trigger heart rate issues, such as italian seasoning that has fennel and also bromelain, commonly found in tenderizers for making pork, steak, etc. affect heart rate. It will take a long time of trial and error but in time you'll find a pattern and see things you may want to avoid to try and keep symptoms at bay. Also, read on lemon balm tea and ginger tea as helpful liquids to drink. Take care and I hope you can find some relief naturally until your appointment. Tammy
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