Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by Tammy

  1. I have had this illness for all to long. Due to the severity, I have been home bound for years. This past year, I have become extremely lonely. I have lost track of many friends as activities they wanted to do I no longer could. I can not work or really even rely on my body enough to volunteer. I use some social media to stay somewhat connected to the world, but it really does not help much. I have pets. Any ideas of what can help with the loneliness this illness brings?
  2. The timing of having your cycle start yesterday could be contributing also. That time of the month makes it even worse for me.
  3. My heart rate is so variable within seconds and minutes. I can go from 67 bpm to 147 bpm without moving or doing anything. I'm on a beta blocker but it seems to not regulate this 100 percent of the time. Anyone else experience this?
  4. This happens to me also. I've had to leave places early. Flourescent lights are awful and any sensory overload, noise, too many people, some smells that are strong, etc. all flare my symptoms at times. It is not fun to deal with and most people do not understand why I have had to leave early for events at times. I can't go to fireworks due to the sound and vibrations from the fireworks or loud bands with excess bass.
  5. My triggers don't really change but sometimes one or another trigger is more noticeable. Heat is a huge trigger right now, yet last summer, I was able to do alot more outside then this year.
  6. Yes, this is true for me also. A virus seems to always makes my symptoms flare even more.
  7. I have the hyper kind and being intimate makes symptoms so much worse if I am flared. When I am not flared, it doesn't seem to affect the questions asked.
  8. I have heat and cold intolerance too. I was outside for two hours this morning in 80 degree heat and feel like death at the moment. I get tremors, chills, pressure feeling through my body, very weak, dizzy and nausea from the heat. I sometimes don't realize I am overheating until it is too late, which is what happened today. I take a tylenol and a xanax to help settle the tremors and then drinking lots of fluids and a little salt for the rest of the symptoms and wait them out. I think if a person hasn't experienced this, it can be hard to understand, but when you can see how sick I look during these spells, it is obvious I'm not well. I hate avoiding the heat because I love being outside, but the after effects of it, at times is challenging to get through.
  9. Stress is something that our bodies have a difficult time dealing with. The ups and downs in life can create more flares and symptomatic moments that are not always avoidable. Positive thinking is very important when life challenges you with situations like this. You will find someone who you can trust again. Try on-line dating and after getting to know them, when you choose to share with them about your health, seeing your illness in a positive light will help as most men like someone with a positive outlook on life and even us with a chronic illness can enjoy being in a happy relationship if we focus on the good things in life.
  10. I still get these but they had been worse a few years ago. My EP said I have a hypersensative reaction to adrenaline. He prescribed a beta blocker (it took a few different ones to try before I found one that helped and it took a few months for it to really make a different) and also an anti-anxiety med to take when they happen (as needed). It is not anxiety but the anxiety meds do make a big difference for me so that my body settles down quicker from the adrenaline surge symptoms and I don't end up in the ER as they never could do much for me either.
  11. You are definitely not alone in this. My daughter is now 8 and I have struggled all the time being very weak and trying to play and keep her entertained. Playing tag is something she loves but it is very rare that I can chase her around. She will always be an only child and this past year she is feeling lonely because of it but I knew I didn't have enough energy to adopt another baby. She is my world and her teachers tell me she is the most loving and compassionate child they have ever met. I think it might be due to my health that she has learned to be caring and kind. Try to look at the positives always as it makes this unbearable illness a little easier to accept. I also was lucky enough to feel pretty well for the last six months but now am flaring bad. So back to this site I come and it is so helpful to know I am not alone again.
  12. Bright sunlight that hits my eyes makes me super exhausted/lightheaded. I can tolerate cloudy days much better, however, I miss that my body doesn't like sunny days, because my heart & soul loves them
  13. This is one of the hardest things in having an illness that leaves you so weak and ill that 'looking good' is almost impossible. I actually 'tested' my husband on the way he treats me based on how I am looking and acting. What I did for a few days in a row, was use ALL my energy to make myself look nice. I looked like I was ready for a job interview (seriously). Then when I talked to him, I didn't talk about how icky I was feeling, but asking him how he was doing, etc. I gave him a massage (which left me even more weak than what I was) and tried to act like I was completely healthy. It was amazing how much it helped in how he seemed to treat me. I wasn't able to do it for more than a few days, but it helped me to realize that I have to give it everything I have to help my husband feel like he has a beautiful wife, even though it is unbelievable difficult to say the least. Not sure if this is really what anyone wants to hear, but for whatever reason, guys just seem to be a bit shallow in this sense and enjoy having healthy & happy women in their lives.
  14. Your labs are similar to what I had for results when I first started struggling with dysautonomia. One thing I always noticed was when I had a back massage that was very relaxing (the ones that just feel so wonderful) it seemed like I would feel better for a short time. My niece was going to college for massage therapy and she was learning how it can increase dopamine levels by a pretty large percentage. If there was a way to find a non-prescription tactic to improve our health, it would be much better than having to deal with side-effects that come with most meds.
  15. After living with adrenaline rushes for 4 years straight (had them daily, and they were especially worse when I had a virus, environmental changes - hot/cold weather, changes in weather, stress, and being over tired and insmonia issues created more adrenaline rushes) - I finally found that combining 1/2 table of tylenol & 1/2 tablet of xanax made so much of a difference! The two together (and a very small dose) seems to work well for me. I had also been on Klonopin which helped some, but made me feel worse in other ways. Something you could check into if it's available for you to try - I'm sensative to Tylenol, but the small dose allows me to make it work.
  16. Not sure why, but I have found that tylenol helps calm them a bit if I take it BEFORE one starts (so basically, if I know I've over done it during the day, I will take tylenol at bedtime and it seems to help prevent them from getting severe). If the adrenaline rush/surges get severe, than the only thing is xanax and klonopin for a day or two until things calm down. Hope you find something that helps ease the severity of them. I struggled with 24/7 adreanline rushes for the first 3 years of this illness, and none of my doctors suggested trying an anti-anxiety med. THEN when a doctor finally did, and I gave it a try, I was so mad that I hadn't known there was actually something that could help and all the suffering I went through for 3 flipping years could have been somewhat prevented. Ugh!
  17. Until you can move out, get a dehumidifier and set it to something like 40% humidity is what is the highest level the air should be at. Make sure to either get one that has a hose so it can drain constantly, or make sure to dump out the water when it gets full to keep the dehumidifier running as much as possible until the dampness that is causing the mold decreases.
  18. I would start out slowly, maybe cut the pill in 1/2 at first and see how you feel on it. For some of us 25 mg is too much even though it is a small dose. I had to go down to 1/4 for a few weeks and as my body adjusted, I was able to bring it up to 1/2 of a dose and have found that to be therapeutic for me.
  19. I think the anxiety will get better in time because as you are able to do more things outside your home, you will find 'safe' places to rest if need be. When I drop my daughter off or pick her up, and school is also about 5 miles away, I tell myself that if I start to flare I can always rest in the car until I'm able to drive back home if need be. I just do lots of mental notes as where I can rest if need be when I'm out and about, and when I'm too ill or weak, I've learned not to push myself too hard or it back-fires and than I end up having more anxiety about flaring when out and about the next time around. Basically you described how I live exactly, even the activities you do are pretty much the same!
  20. I have had these type of episodes also, and it is scary being so weak, feeling lifeless and not being able to talk or open eyes, etc., while your brain is working and trying to get up enough strength to say something. Usually it is an effort for me to keep taking breaths also when these spells happen... I have to tell myself to keep taking breaths. Once my body pulls itself out of the spell, I have taken my bp and it is usually really low, something like 60/45, which tells me my blood pressure dropped and my heart isn't pushing blood around like it should because of how close the numbers are. I don't know what causes these either, but they are awful to experience.
  21. Even though there are so many symptoms to try to cope with while living the POTS, one of the most frustrating to me is how weak I feel off and on throughout the day. If I attempt to do anything more than reading, watching TV, etc., I am left feeling so weak. It doesn't seem like muscle weakness, it is more of just that my whole body feels very weak and I have to lay flat down for a few hours and then my body sort of can be upright again for a while. Anyone else have weakness issues?
  22. I also have hypothroidism and higher cholestrol levels, which from my understanding is typical. They seem to go hand-in-hand.
  23. We actually use a vibration base (you just stand on it and it vibrates) when my hubby has muscle pain/back pain and it seems to actually help him. When my daughter gets pneumonia, we have her lay on it to help loosen the stuff in her lungs and it seems to help that too (and is easier than having to repeatedly tap on her back). However, I'm unable to tolerate it as the vibration makes me feel really weird and it seems to kind of affect my heart rhythm. So not sure if this would work as a weight lose plan for those of us with POTS.
  24. I know two people who do not have POTS that have this same problem. I don't think it is related to our illness. No fun though, and the hole in the toilet is not big enough, so one guy I know has an outhouse he uses for that specific reason!
  • Create New...