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wareagle

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Everything posted by wareagle

  1. I've had POTS for over 6 yrs now and have stuggled with feeling isolated a lot. I found that there ARE things I can still do to feel like a contributing member of society even when I am feeling too bad to be social. Have you thought of joining a group that supports our troops? There are several online...I'm actually a part of Soldier's Angels. You "adopt" a soldier and send one letter a week and one care package a month throughout their deployment. It doesn't require a lot of energy or money!! I've also been growing and donating my hair to charities like Pantene's great lengths. Again, it's something that doesn't require any energy but helps someone else. It always makes me feel better to know that something I've done has impacted somone else in a positive way.
  2. I also had the HIDA with CCK. I didn't realize they did them without it?! I also would suggest you ask your doctor to include it in the testing...since you're having it done already. I didn't have an attack during the testing...just got really quesy for a couple seconds after the CCK but there was someone in there with me the WHOLE time so please try not to worry! My results showed an Ejection Fraction of 4% and I had my GB removed a few days later. It was really nice to be able to eat again!! Keep us posted....and good luck with everything!
  3. Welcome home Morgan!!! So glad that the surgery is OVER...sending healing thoughts your way!
  4. I'm so glad to hear that everything checked out okay!!! These episodes sound terrifying and my heart (no pun intended) goes out to you. It sounds like others have offered some great advice. Perhaps the "walking around" test will work for you...ie. if the pain gets more managable no ER! Maybe you and your doctor can come up with some sort of protocol for when these symptoms present themselves....like take some asprin like bjt22 does and walk around to see if the pain disappates...and if it doesn't call them before going to the ER...something like that. I hope that you get some answers so that you can find a tx. that will help aliviate these horrible symptoms. Again...so happy that the EKG was good!
  5. Just wanted to chime in and offer a suggestion. There are ways you can use your degree without actually having physical patient contact. Have you looked into nurseing consultation on line or by phone? I know when I was looking for at home work I came across companies that hire nurses to do that type of work. You know, like the nursing hotlines for Blue Cross/ Blue Shield ect. It might be worth looking into!! Good luck and keep us posted!
  6. I understand your reluctance to go to the ER. With that said...any time you are having an episode that feels like it could possibly be a cardiac event you should go to the hospital. Unless you are hooked up to an EKG machine at home there isn't a way to rule out a heart attack. Do you have a doctor that you see on a regular basis? Cardiologist, Autonomic Specialist, or even a General Practitioner? If you don't...get one. If you do perhaps they could collaberate with the hospital and in the event you need to go to the ER they will be familiar with your medical history. I know that we can experience a lot of scary symptoms that can be contributed to dysautonomia and it that MAY be the case in this instance too. But b/c these symptoms are classic for an MI as well I wouldn't risk it...please see a doctor!!
  7. I don't know anything about Dr. K...but I will share my experience with Dr. Cheshire. I was sent to Mayo at the beginning of my illness. Granted it took months to get in and I had to return on several occasions. On my second visit they did an "autonomic" screening and I saw neurologist. I happen to see the Neuro. BEFORE the results were in and he was "confident" that I didn't have autonomic problems b/c I didn't pass out in his office. Then the results came back...ABNORMAL. So, my internal med. doc who was my "main doctor" during my time at Mayo recommended a full autonomic work up. So I then had to return again to Mayo for this final testing. I was excited b/c I was going to see a specialist, Dr. Cheshire. I had my workup (turns out the full workup was only a 10 minute TTT)...and he dx me with "atypical anxiety disorder". Told me to go home and get on an antidepressent. Based on my "abnormal" TTT and other symptoms I sought out the opinion of another specialist. I went through another TTT and was dx. with florrid POTS. I really do have a text book case of POTS so I don't know why DR. Cheshire didin't dx. me. It was a really disappointing experience. I was terrified at the time...had NO knowledge of what was going on with my body. Mayo did nothing to help me...other than rule out a bunch of stuff. So, I usually don't speak out about Doctors as I know they are human too. They have good and bad days. I'm sure there are others on here who have had great experiences with Dr. C...I just wanted to share mine.
  8. You may want to ask you doctor about trying Clonodine (catapress). It's used for high blood pressure but also is really good at relaxing the sympathetic nervous system. Is there any way that taking all these bezos and mixes of sedatives could be causing some sort of reverse reaction for you? For example, I know some people actually get 'wired' when taking things like Benadryl when it's usually sedating. The only other thing I can think of is trying some sort of Biofeedback therapy. I know that some people have been able to calm their systems down to a degree utilizing this. I hope you find some relief soon.
  9. 1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? My doctor has told me that blood pooling in the abdomen and legs are common with POTS. I've definately had indications of blood pooling in my legs...color changes, itchy, ect. 2. Have you ever been diagnosed with EDS or suspect that you may have it? No 3. Do you experience symptoms when lying down even after a night of sleep in your bed? No 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? No 5. Have you ever been informed by a doctor that you have low blood volume? I've never been tested...but my POTS doc. believes this is a factor for me and most patients 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? Yes 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? I've never really noticed! I know that when people touch my feet or hands they comment on them being cold but it's not something I personally notice. 8. Did your POTS arrive suddenly? Yes and No. I've always had issues related to energy levels. For as long as I can remember I've always had trouble with high impact exercise as well. It never stopped me from living a normal life though. Then things suddenly got a LOT worse and hence the POTS dx. I definately had some sort of viral trigger...but I believe I've had an underlying issue since childhood. 9. Is your skin pale? Yes...I'm Irish LOL 10. Please the top 6 worst symptoms that you experience with POTS: * Fatigue / heavy feeling / exaustion * Little to No stamina for even mild activity * Balance / motion issues (feel like I'm rocking/moving when I'm not) * Coat hanger pain (neck and sholders) when upright * Dazed feeling...I say it feels like I'm on autopilot * Ocassionaly sleep issues...getting my body to relax even when I'm tired
  10. Thanks Melissa! I should have gone back a bit further in my search...I know you've posted about the Mestinon before. I'm glad to know that it actually helps with orthostatic issues. I've heard so much about the increased GI motility that I was beginning to think that was the only benifit people were getting!
  11. Hi all. I'm going to see my POTS doc soon and I'm ready to add some more meds to my mix. I've been on Florinef and Clonodine for 3 yrs. and haven't really tried much else. I'm finally brave enough to try some more stuff. I DID try Midodrine and can't take it b/c it hurt my bladder way too much (I also have IC). I've been thinking and discussing possibly trying a stimulant like Ritalin...my concern with this is that I also take the Clonodine. Apparently there can be problems with this combo. and I don't want to stop the Clonodine as it has been very helpful. Has anyone take Ritalin and Clonodine together? I'm getting mixed messages when I research it and don't know what to think. I also thought I'd maybe give Mestinon a try. I've done searches and it seems some have success and some don't. Guess it's the same with all these meds. Fortunately I don't think I have to worry about many drug interactions with this. Does this med help you to be upright more....or is it mainly used for GI motility issues? I'll definately be discussing this with my doc. but thought I'd get some feedback from ya'll before I went. Thanks for any info you can give!!
  12. ((((Julie)))) My heart goes out to you...such a difficult loss. Sending gentle hugs your way.
  13. This could be WAAAYYY off base...but have they considered Interstitial Cystitis? It's a bladder condition that causes a lot of pelvic pain and cramping. I've never had bladder issues in my life until all of a sudden a couple of years ago this started. It's very frusterating and can take awhile to be diagnosed. Pelvic Floor Dysfunction can also cause pelvic pain...have they evauated you for that yet? One treatment you may want to look into for pain management is TENS therapy...some people have a lot of success with it especially if symptoms are related to pelvic tension. Just wanted to give you a few suggestions just in case you haven't explored these yet. I hope you get some answers and relief soon!
  14. Just wanted to add a "me too" to all of the good thoughts and prayers coming your way. Hope you get to go home soon!
  15. I saw my doc. today and he said that you can get the pharmacist to order 1 gram sodium tablets. They're just supposed to be sodium chloride but you can't get them over the counter. You don't need a rx either. I'm going to try tomorrow and see what they say. If they are pure sodium then I'll be sure to letcha' know.
  16. I'm also trying to find something I can do from home. I recently contacted my state Vocational Rehab office. It seems like the whole process may take a couple of mths. but it may be worth looking into. I've heard possitive things in the past regarding voc rehab. so thought I'd give it a shot.
  17. Sorry..I should have clarified. The warning with florinef pertains to live vaccines...so flu vaccines should be fine. I thought maybe the same was true for the chicken pox vaccine but apparently it's a live one.
  18. Hi guys. I'm 32 and I've never had chicken pox...been exposed plenty of times but blood tests have confirmed I've never had it. I mentioned this to my POTS doc several mths. ago and he strongly suggested I think about getting the vaccine. When doing some research though I found that Florinef has a warning NOT to take live vaccines while on it. I haven't had the opportunity to discuss this with my doc. yet. Just thought I'd see if any of you know WHY the vaccines aren't recommended while on Florinef. It's been on my mind a lot lately as I really want to see my neice and nephew more. I just worry about being exposed to the virus, especially now with all my other medical issues. Does anyone have experience with this vaccine? I'd hate to go off of the florinef as it's one of the only meds I take...but I also don't EVER want to get chicken pox. Any info. is much appriciated!
  19. I do really well with Clonodine. I've never even tried a BB b/c it's been so helpful. I started out with just 1/4 tablet at night but I now take 1/2 tab. It does make you a little sleepy at first but it really doesn't bother me. I know most people take a lot more than this but at these levels I don't have any side effects and it's really helped calm my sympathetic nervous system down. Good luck and keep us posted.
  20. Happy B-Day!!! Hey Luv! I hope you have a fabulous day, weekend, week, month, and year!!!
  21. Hi all. This is a continuation from the "dysautonomia friendly" job post. I've been struggling for mths. now with this obsession to find SOME kind of job that I can still do. I went to college for 8 yrs. and got both a BS and Masters in Speech Pathology and had to stop five years ago at the age of 27. I'm starting to panic a bit now....I'm fortunate to have SS disablity, but I simply can't live on that forever. As it is now I couldn't afford to live on my own (stay w/my mom)...much less start saving for my "retirement" years. I simply have got to find a way to start bringing money in, even if it's not a lot. My limitations are that I still have the overwhelming fatigue most of us face and some days it's hard for me to be upright much. I also have a problem with driving. I can go short distances but I just don't feel comfortable risking longer trips. There are no jobs close to my home within my field of study, and even if they were I don't know how flexible they'd be. I even had the crazy idea of attempting to get my PhD and become a professor, but if I'm being realistic, that's simply not something my body could handle. I just keep hitting wall after wall after wall on this issue but I can not let it go and just "accept" that I can't do anything to earn a wage. I mean, I still have a brain; I'm still quite capable of reading and understanding material; I still have opinions; I still have value as a human being. I just keep kicking myself for not choosing some other field while I was in college. If I'd only know then, right? I've looked into online teaching (need a teaching certificate) and tutoring, medical transcription, medical billing/coding, and all the other "at home work" sites. I have no idea how one becomes a writer, or an editor, or a e-bay seller (or even what an e-bay selller is). I don't know how to sell makeup like Avon, etc. (can you actually sell makeup without leaving your home?) I'm sure there are all sorts of things that I haven't looked into b/c I don't know that they exist. I mean there's no spiffy website you can go to and type in your physical limitations and get job recommendations. This is all just so infuriating...and a bit degrating and depressing. I keep coming back to the medical transcription thing. I've gotten some recommendations for legit traning programs...but they are a lot more expensive than I had anticipated. If anyone has any experience in this field please contact me. It's a big decision...but I feel like I've run out of other options. The training would take a year...maybe less with my medical background. If anyone has any other suggestions please chime in...or if you're uncomfortable posting please send a private message. Thanks for reading my rant.
  22. I'm so glad you posted this question...I'm in the same boat as you! I feel like I've improved enough in my symptoms to do some sort of part time work from home; I just don't know what to do. I simply can't work within any type of "schedule" b/c I never know how I'm going to feel. I don't really feel comfortable driving a lot either. I was looking into the medical transcription too...what kind of horror stories have you heard? I haven't really commited to any program b/c some of them are really expensive and I can't decide if it's worth it or not. I also was thinking of the tutor.com...but if they need math people that's definately NOT me. Keep us posted on you're progress...and if I think of anything I'll letcha' know!
  23. Hey guys. I'm starting to get a lot of sinus pressure building in my head. It's starting to hurt my jaw and ears. I don't really have a lot of nasal congestion...just a lot of this darn pressure. When I blow my nose I feel like my heads going to explode. My question is would something like a neti pot work for this or does it just help with nasal symptoms? I really don't want to take a decongestant if I don't have to but I don't want this to turn into an infection either! Help!
  24. Thanks for sharing with us Ernie...what a wonderful gift hope is!!! I'm a little late but... Happy Birthday!!! I'm so glad it was special for you!
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