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Everything posted by radiohfan23

  1. I have got to say that this sounds an awful lot like me. Totally bed ridden, weak, dizzy, etc etc. I was exercising when pots struck and have tried to keep at it but my body just cant take it anymore and i totally understand what you mean by deconditioning not being the cause. I recently got in touch with a home medical doctor who is wonderful because i can no longer get to the office without lying down the whole way. Things have just deteriorated despite my efforts to exercise. I have a physical therapist come to my house twice a week but i always try too hard and about an hour later i really start to suffer. I would say that movement no matter how small helps. At least in terms of mitigating some suffering. I wanted to chime in because i am currently thinking there is some sort of neurotransmitter issues going on with me. Have you looked into dopamine/norepinphrine relationships at all? I am just getting into this more but symptoms wise an imbalance or synapse deficiency or problem may be at play with me. I never feel relaxed anymore despite being relatively happy and content. So, just wanted to chime in in case this helps and to let u know that i know what you are going thru as so many of us unfortunately do. Take care and i hope u find answers really soon! Joe
  2. Thanks everyone for the info. I just started taking this last night. 1.5mg at bedtime. I slept quite deeply and an hour longer than usual, other than that nothing else thus far in the way of side effects/benefits. I am staying at this dose so I'll check in periodically with my progress.
  3. So I had my second injection and was having some of the same side effects. High BP, headache, more dizziness, etc.expect this time it failed to dissipate and the hang over type feeling continued for a few extra days. The doctor recommended I take two weeks off and restart next week. I may lower the dose but he said that the good thing is that it will sill remain effective for quite some time so I am not really restarting the therapy. WIll keep anyone interested in following in the loop when I can moving forward. Take Care.
  4. Had my first injection today. No allergic reaction or initial side effects. I just sort of feel groggy and weak with a bit of a 'sick' feeling but not serious enough for me to assume it's related to the injection versus just being a lousy day. The only noticeable side effect is high blood pressure. I noticed some chest tightness (nothing alarming) and my bp is up in the 150s over 90s. I do have pretty normal bp most of the time unless I'm standing up when it is a bit low. So I'm gonna take a baby aspirin if it continues to stay so high. So far nothing big to report but will keep everyone posted if anything changes.
  5. Just got approved on my first try also... wasn't expecting it but am thrilled.
  6. FYI, I'm about to start taking Erythropoietin this thursday. I just had some basic blood work done (CBC, hematocrit, etc.) to get a baseline of my current levels and will be tested monthly as I go through the treatment. I'll check in to update how it goes. Basically we're just following the protocol with which Dr. Grubb has had success. I can say that it was quite difficult trying to get the medication as most pharmacys don't carry it and insurance will not cover it. It costs about $180 per injection for the generic type i'll be taking, so it isn't cheap. We ordered just the first dose to make sure I don't experience any side effects before ordering all 10. Here's a bit more about me, so that anyone considering this has a sense of my case to compare as to whether he/she may have a similar response to the EPO, I do not know the cause of my POTS - doctors believe it's autoimmune but no definitive tests to confirm (although, I am in the process of going through Mayo's autoimmune dysautonomia testing profile). I currently am taking only multivitamins and salt loading with the occasional xanax as needed at a low dosage. I've been through the run of all the standard medicines and haven't been able to tolerate them. In terms of severity I'm pretty much bed ridden as I'm constantly very ill and weak. I'll try to keep on top of posting as often as possible so that anyone considering this options can get make a knowledgeable decision given the expenses associated with this option. And feel free to PM me if you'd like, I'm happy to try and help if at all possible. Joe
  7. I should say though that he will do a TTT if necessary but it isn't going to b a full lab work up like at mayo or Cleveland. But he is very knowledgeable and will try different medications appropriate to ur situation.
  8. If u can travel I see a cardiologist in new jersey who is good. Dr Tullo. Go to njfaint.com. Wait shouldnt be terribly long.
  9. Thats interesting because yesterday and today I've been particularly ill.. Worst I've felt in a while actually. I was wondering whether the solar flares may have something to do with it, but hadn't thought about the full moon.
  10. Cant wait to hear it. I'm totally impressed and very grateful for you doing this. Take care and rest up, I'm sure you're exhausted after all of this.
  11. Glad this helped, I was pretty happy with it as well. I'll let you know when I get the orange tinted glasses and lighbulb. I'm so happy this has helped, please spread the work... there's a lot of exhausted potsies out there!
  12. My wife saw on Dr. Oz this week that using orange lights at night can help with falling asleep. Basically, as the sun rises it emits blue rays which stimulate you and keep you awake and alert. Computers, televisions, phones, lights, etc. produce a similar emission. Then, at sunset it emits orange rays which signal you to relax and wind down and get ready for sleep.The recommendation Dr. Oz made was to place an orange bulb in your room and turn it on about 2 hrs before you go to sleep and let it help wind you down. There is also a program you can install on your computer called f. lux (http://stereopsis.com/flux/) which dims your computer to produce orange light in accordance with the sun's schedule. I need to watch something nightly in order to help relax/distract me from feeling like crap, but it hurts when i'm trying to wind down and sleep at night. I downloaded the f. lux program (totally free) and saw a nice difference at night. I could view my computer screen without feeling so over stimulated and i've noticed a reduction in headaches at night. I have also ordered a standard orange tinted light bulb an a pair of orange tinted glasses which make a big difference. I'd highly recommend looking into this for anyone who has similar issues. There is no downside and I've had some positive results. I'm new to discovering this so if anyone else is more of an expert please chime in!
  13. Lieze, i think you make a great point. It's easy to feel guilt over relationship troubles, but unfortunately the reality is that there is a limit on what we can manage to deal with and it's important to realize that what is important is to focus on managing and trying to overcome your symptoms versus trying to fix something that is not your fault. Hope that makes sense.
  14. Hi Michelle, Thanks for sharing this and I'm so sorry for what's happening. Unfortunately, (as I'm sure you're well aware) I think a lot of us can relate, myself included. My wife and I have been married for nearly 2 years and together for 6. I'm very lucky for what she has done for me and for how caring she has been but I fear the end is coming soon. I'm living with my parents about 5 hrs away because I'm unable to care for myself like I would need to do if I were with her. I've come to terms with the fact that I'm ill and that those close they are to us, will never realize just how horrible and serious this truly is. Sometimes I get so angry that nobody understands how I feel and they seem way too tough on me. But what i have to tell myself is that when I was healthy before I realized this level of suffering I would never have understood it either. I can only hope that I would have been as wonderful as my wife has been. I try to stay as positive as I can for her sake because to spend excessive time talking about just how horrible I feel all the time takes away from what hope she has left. But sometimes it seems like i'm just lying when i speak positively about a horrible situation. So, what I have learned from all of this is that I may not be able to control the fact that I am suffering and likely will suffer for the foreseeable future, but I can try and make her as happy as possible and that makes me happy. In terms of a normal relationship I have found that leaving notes, writing emails/letters, etc. have helped me stay close with her. In the past before I got ill I took a lot for granted and now that I see that, I've used it to try and grow stronger with her. But, unfortunately I feel like the reality is that as I grow more and more bed bound it is more and more likely that she will have to move on. I wish I had better answers, I'm sure more people here do. I just wanted to share my experience and let you know that you're not alone despite how desperate and lonely this illness can make you feel. I wish you and your boyfriend the best and will be thinking of you both! Joe
  15. I am going to see a new doctor as I suspect Lyme disease could have caused my POTS outbreak. One thing in prep he's had me do is take periodic temperature readings. I'm consistently low ranging from 96-97.5 degrees. From what I've researched it is consistent with Lyme disease to have this. I also have a low WBC which is also consistent with Lyme. Does anyone else have low or abnormal body temperatures? thanks, Joe
  16. Update for anyone still following... I'm 12 days in on 2.5mg and starting to do better. The big thing is that I am finally sleeping better. I feel in a state of a sort of lazy drowsiness most of the time which is nice because it actually allows me to relax. This is especially true in the mornings in that instead of waking up to a panicky uneasy feeling I can continue to lay down comfortably and slowly work my way out of bed. I also have noticed the gastro issues aren't as bad. My digestion is typically quite fast (I was diagnosed with dumping syndrome after an emptying study) and I feel as though it has slowed to a "normal" pace in that I don't get the big blood pressure drops I typically get after eating. I've had to take antacids to alleviate some of the heartburn but I did read that increased stomach acid is a typical early symptom when adjusting to Lexapro. And I continue to eat moderate/small meals frequently throughout the day as most of us already do anyways. All in all I have at least gotten somewhat adjusted to the meds and no longer feel medicated or the excessive early anxiety symptoms. I am also able to continue with my light exercise which I was too ill to do early on during the first week of the medication due to the severity of the side effects. So far so good!
  17. I've made it through the first week and am doing pretty well considering. A lot of the side effects have gone away, no more yawning or headaches and the nausea is lifting somewhat. I was able to exercise on my recumbent bike yesterday and today for a good 20-30 minutes at a solid resistance. The only problem I'm still having is that I generally feel uneasy (lots of brain fog - hard to say whether that's the meds or just POTS in general) and despite being tired I am unable to sleep like I need to. I normally sleep from 1 0r 2 until 10 or 11ish but now I am unable to sleep until like 4 or 5 in the morning. It's decent sleep but I can tell I'm not getting the REM sleep I need. I am taking the lexapro as soon as I wake up (usually around 1ish) so that it's in my system earlier, so hopefully over time I'll start sleeping earlier and waking at a decent hour so that I can start taking the meds early in the morning so that it won't interrupt my sleep. I can't say quite yet that it's 'working' or anything, not that I expect it to, but I am quite pleased that the side effects have lessened and I'll take that as a good sign. More to come...
  18. Still at 2.5mgs I may cut the dose to see if it's tolerated better, then I can work it up more slowly as tolerated. My big concern is not being able to sleep, I'm pretty scared about that. We'll see how I feel throughout the day and whether I will drop the dose down tomorrow.
  19. 4 days in and symptoms are ramping up. I've been having headaches and lots of nausea with a general feeling of uneasiness that is quite intense. Cold washcloth helps with the headaches and I've had to spend most of the day in bed. I'm going to try to exercise lightly today but i'm pretty weak. I'm also noticing my memory is quite poor. More to come...
  20. 2 days in: - Doing ok, kinda weak/tired feeling and very sleepy - feel a little too uneasy to nap but slept well once I finally fell asleep last night - I yawn excessively which is common for Lexapro whether you suffer with dysautonomia or not - The thought is that with increased brain activity your brain is overheated thus triggering yawns which actually cool the brain (after some research I learned that excessive yawning for any reason is not a result of oxygen deprivation as once theorized - that myth has been medically disproved) We'll see whether this dissipates as I get adjusted to the medicine - Appetite is decent (I normally have a poor appetite in general) More to come as I keep going...
  21. He is actually quite knowledgeable of them and realizes that it can unfortunately be trial and error before you find the right one. He offered paxil 5mg moving up to 10 when comfortable but since I'd used lexapro in the past he said that would be fine since others have used it successfully. From what I've learned Zoloft isn't as popular for 'Potsies' but i'd like to hear from others with experience.
  22. Background: 30yr old male onset at 27ish - non hyperadrenergic (peripheral dysautonomic) pots. Currently unable to work with sever fatigue, nausea, unable to stand very long, etc. I am also taking DDAVP at night, mult vitamins, going off gluten and have been exercising on recumbent bike 3 or 4 days a week. About 5 years ago before I had POTS i had a panic attack and was given lexapro 10mg and only stayed on it for about 3 weeks before stopping since at the time I didn't really need it. I simply had a random panic attack after a very stressful event. For the next two years didn't have any issues until POTS set in. I had tried Zoloft with awful results - lost 20lbs and was crawling out of my skin after about a month at 50mg - This was before I knew I had POTS. I took my first dose at 2.5mg at 11pm last night (9/22) - had some difficulty falling asleep but was able to get a solid 7 hours - woke up with a strong headache (different from migranes) in the front of my forehead - which got milder after a few hours - appetite so far is ok - was able to do a light 10 mins on the bike and get a decent stretch and some ab exercises more to come as I progress = please contribute any questions/insight that may be helpful for the anyone interested
  23. Thanks for sharing this. I want you to know I feel just awful for you. Relationships are certainly tough even when you're healthy! I developed POTS about a year before my wife and I were married and struggled through everything. She's exceptionally supportive but there are times when she just can't handle it (very understandably). Just please please know that it's not you it's the illness that is causing problems. As a guy myself I can definitely say that there are caring compassionate men out there who will love you for who you are and accept how different your life is because of your illness. It may sound corny but it is true. Take care and always know that you're not alone and if you need to do it vent don't hesitate, you've got a lot to handle and we can all relate.
  24. I had problems with Zoloft too. Caused me to lose my appetite and was very weak and anxiety increased intensely. Worst i've ever felt in my life. I went off of it after a short while and feel better. Am going to try lexapro instead.
  25. Naomi, just wanted to thank you for doing this. I think polls like this can be invaluable in terms of research.
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