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Timbo

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Everything posted by Timbo

  1. I find it ridiculous that after all you have done for a company, they do nothing for you. You were there when they needed you, but as soon as you get sick they abandon you. I understand the principles of running a business and that they need someone to do the job, but a temp could be hired until you are able to return. It is outrageous that there are no laws to protect an employee who becomes chronically ill.
  2. I have found a way around the fatigue. I get up, eat and get on my exercise bike for 50 minutes. If I do it early enough I find I can get through the day with little or no trouble. If I can't get on the bike within the first hour or two of my day, then the fatigue sets in and I will spend the majority of the day feeling lousy, then at night I feel OK. I don't know why the physical activity prevents the fatigue, but it works almost all of the time.
  3. No one in my family has any type of dysautonomia. I am the lucky one.
  4. Its not a big deal for me. It only jumps 20-30 bpm and then goes back to normal within 30 seconds. It must be an autonomic response/over-response as stated before.
  5. I wonder what causes it. It has never been a symptom that bothers me, it never happened to me before POTS.
  6. Sometimes when I roll over in bed at night my heart will speed up for 20-30 seconds and then calm down. It's not a symptom that really bothers me, but I am curious if any of you experience this.
  7. This is why I love this board. It helps me to realize that I am not alone with these worries. I had a really rotten nightmare last night that I got diagnosed with SDS and woke up totally freaked out. I need to stop researching SDS on the internet, I could get a degree in it by now.
  8. No pneumonia symptoms. I have had it before and it was no fun! I am getting my flu shot next year. The shortness of breath is gone. The flu must have caused it. As soon as my lungs cleared, it went away. I have some lingering fatigue/weakness but that is normal and could last a couple of weeks afterwards.
  9. I thought I had rabies before my dx. I have a cat that bit me by accident a few months prior. She was immunized but I let my mind play some serious games with me. So I know EXACTLY where you are coming from. If I had thought logically I would have realized that 1. She was immunized so there is no way she could get it 2. The bite took place 4 months prior and she would be dead by the time I had symptoms. 3. The bite never broke the skin. It is scary the way your mind can convince you of something that simply isn't true.
  10. Do you have this guys phone number? I live next to WV.
  11. I just got over what I can only describe as the worst flu of my life. Now I am having moderate fatigue after it and when I lay down I get short of breath. I have had POTS related shortness of breath before but not after laying down. Has anyone else experienced this? Oh and I HIGHLY recommend getting a flu shot every year. I found out how bad it can be the hard way.
  12. I agree, when I went for one of my exams I had a team of doctors and interns around me and he kept saying Shy Drager does this Shy Drager does that. I was in a panic by the time they were done.
  13. Roy that happens to me as well. If I lower my hands at my sides the veins look normal, if I raise them they collapse from the lower pressure.
  14. I hear an airplane ride can trigger POTS symptoms, but it has never happened to me yet.
  15. Same with me. Mornings are the worst, but I find if I exercise, I can get through them and most of the day will be just fine.
  16. I have noticed that during the past year that the veins on the underside of my arms, from the wrist down along the forearm, have slowly begun to fade. When I raise my arms the blood pressure in my arms fades and the veins almost disappear. I assume this is because of my dysautonomia or maybe this is perfectly normal. I know that they do not look as stong and are not as visible as they were a year ago. Has this happened to anyone else? Thanks, Tim
  17. I have noticed that many web sites refer to a condition known as Postural Tachycardia Syndrome, however I cannot find any information about it. Is this POTS referred to by another name or POTS without the orthostatic Hypotension?
  18. I suggest that DINET opens a PayPal account and puts a donations button on their web site. I did that for my Christmas internet radio station and I received enough donations to cover operating expenses for the next year within a week.
  19. I guess I am the lucky one here. I can't afford insurance, but the VA covers me since I am a veteran. You can investigate medicaid, but they have caps on how much income you can earn before you qualify. If you have a bad case of POTS you could always file for disability which generally includes medicaid as part of the deal. Disability is not easy to get, you almost always have to appeal to get it.
  20. This all started for me a year ago as well. December 10th to be precise. I felt lightheaded for a week and then I wound up in the ER feeling like dirt. I was fine until August and then fatigue set in, but exercise has helped manage that. My problem is that I do to much research. I read about SDS and when I get a symptom I start to worry and the hypochondria kicks in and it can literally ruin a few months of my life. I had neck twitches back in March and thought it was SDS because my doctor first told me I had neurologic hypotension so I did a search and found that Neurologic Orthostatic Hypotension is another name for SDS. I nearly lost it then and there. Then I saw a competent doctor who diagnosed POTS (which I already knew I had).
  21. During the past month or two I have noticed some action tremors (tremors that occur when making a vountary movement) on many of the fingers on both hands. This is a recognized Shy Drager symptom. The tremors are mild and come and go, but this has reawaked my fears about Shy Drager. I have never had any major othostatic symptoms such as fainting or near faiting. On occasion, when I stand up I get a bit dizzy but no more than normal before this all started. This happens to everyone once in a while from what I have read, even people without orthostatic hypotension. My pressure is about 105/70 sitting and andwhere from 90/65 to 120/80 standing. My heart rate is about 60 sitting and 95-110 on standing. From what I understand this is the classic POTS hallmark. According to most web sites, impotence and incontenence are usually the first signs of SDS and I do not have either. Do any of you have action tremors? I have read that tremors and twitching are symptoms of orthostatic hypotension. I feel good, I get fatigue from time to time which is a POTS symptom and not a SDS symptom. Maybe hypochondria is getting the best of me, but this tremor thing has me worried. Does anyone have tremors and if so where? I have read articles with POTS patients who do have them, but I can't ask them what kind they have.
  22. I am having a lipoma removed in January, they are going to use a local anesthetic. Has anyone had or heard of problems with that?
  23. Sometimes at night I will wake up and turn over in the bed and as soon as I do that my heart races for 30 seconds and then calms down. It is strange how the body reacts sometimes. This all started when my POTS started. It had never happened before.
  24. Just an update: My father is doing way way better. He is having his second ECG tomorrow and the nurse basically guaranteed him that his ejection fraction (heart functionality) will be improved. He is up and puttering around the house. Somehow he sustained a stress fracture on his leg and has a soft cast on, but I have my father back!
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