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Carolyn Morris

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  1. Hi Serena- I was dx with POTS in 2006 and later with EDS Hypermobile type in 2009. I guess I've had it all my life and never knew (I'm 48 now). I have always been double-jointed but never dislocated anything. I did hurt my back and hip in 2010 which the doctors feel may be EDS related, but I'm a lot older than your son. My POTS treatment didn't change after it was found out that I had EDS. Kept same protocol in place. Keeping my leg muscles strong REALLY helps. I am glad that I know I have EDS though because I saw a physical therapist who suggested exercises that protect my joints.
  2. Hi I was dx in Sept. 2006. Took me 2 years to slowly come back. Eventually I was off all my meds. (mestinon, midodrine, venlafexine) and doing okay. It was not that I had no symptoms, but with continued loads of water, salt and exercise I was doing alright. I was able to keep up with my kids,walk, ride my bike, cross-country ski... and finally return to work (part-time by choice). Felt great,really great... so I guess it could be called a remission. I thanked God... everyday. Now after almost 2 1/2 years of "remission" all symptoms have come roaring back for an unknown reason. I'm back on meds. and trying to start my way back AGAIN. I hope I can. It's scary. I feel that I did it once before. Why not again? (This is what I tell myself to keep fighting!) Like lina said, I do believe that there are people in remission who we don't see on the forum because they are back to living their lives!!! I haven't been on the forum until now... until my return to the world of POTS. Now I ask God for help... everyday.
  3. I would just like to add that I have been trying to come off Effexor for a year now. It helped with my anxiety when I was initially diagnosed with POTS. After my initial "crash", I started to gradually improve and then after two years decided to stop taking Effexor. I have been slowly weaning for this past year and it is an absolutely excruciating experience. The addictive quality of that drug and its withdrawal symptoms are immense! I have read that its withdrawal compares to trying to come off heroine. Think very, very carefully before taking Effexor because if you ever decide to go off it, that will be quite a challenge. b'shert
  4. You all are right. I don't know why I decided 12.5mg was low enough to jump to zero. I decided to go back to the 12.5 and slowly wean to 6.5, then even scrapping at the pill later. For right now, I continue to be on my 12.5 dose. I was "side-tracked" in May with a wonderful virus accompanied by a fever of 103 degrees. It has taken me a while to get my strength back. When I continue my weaning (which I am still determined to do), all your posts will chime in my head and I will go slower! Thank you all for your support. Where would I be without all of you! B'shert
  5. I have Hashimotos and was put on Nature-Throid. It contains T3 and T4. It is not synthetic. The hormones in Nature-Throid are derived from a natural porcine (pork) and are supposed to be absorbed more easily. It also has hypoallergenic binding ingredients. All I know is that I noticed a dramatic difference in my energy level when I started taking it. I've been on it for over two years now. Bshert
  6. Hi everyone- Over the past 11 months I have been slowly weaning off venlafaxine (effexor). My doctor suggested that I may have less fatigue if I was off the drug. Finally, I was down to 12.5mg (from 150mg) and stopped it entirely this past Tuesday. I FEEL HORRIBLE! Fatigue, confusion, dizziness, brain fog.... brain "zaps"... joint pain... Sounds potsy or it may be from stopping the med... Which is it?! How do I know?! The thought of going back on the med. to get rid of how crummy I feel sounds great, but it has been such an incredibly long and difficult journey weaning to get this far. I know I should just hang in there and stay off it to wait to see if I get better.... but I don't know if I can hang on. I feel like an addict...I feel so sick. I want to give up. I just want to GIVE UP!
  7. 1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? No 2. Have you ever been diagnosed with EDS or suspect that you may have it? Yes, I suspect I do. Going to see a geneticist 3. Do you experience symptoms when lying down even after a night of sleep in your bed? Yes 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? Yes 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? Nausea and bloating 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? Yes 8. Did your POTS arrive suddenly? Yes 9. Is your skin pale? Yes 10. Please the top 6 worst symptoms that you experience with POTS: Fatigue, Body Pain, Brain Fog, Digestive Issues, Sensitive Sensory Issues, Exercise Intolerance
  8. Mary- I took Mestinon because my esophagus was pooping out and I couldn't swallow. Mayo gave it to me because "Mestinon allows acetylcholine to remain at the neuromuscular junction longer than usual so that more receptor sites can be activated resulting in a stronger muscle contraction and less weakness". In other words, it got my esophagus working again. After being on it for a while with my esophagus acting just fine, I went off of it. My symptoms came back within a couple weeks so I went back on it. After a few months back on it, I went off again because everything was working fine. I've luckily been able to remain off of it since... it's been almost two years.
  9. I was prescribed Mestinon at Mayo. I started 30 mg. breakfast and dinner. I gradually titrated up from there. I took it for gastrointestinal symptoms... extreme nausea and difficulty swallowing. It started helping somewhat for me within a week. Then more with the titration up. It helped. I'm off of it now and better. Hope it helps you too! B'shert
  10. After watching my family and friends get progressives and adjust fairly easily, I was down that I was having such a hard time. You would think that after two years of having POTS, I would have taken my "disorder" into account and know that I'm not exactly like everyone else trying those glasses. I didn't. Now, after trying many days with these glasses... and finally falling yesterday... I'm going back to distance glasses only. At least for now. I put on my old glasses and felt so much freedom! Just back to my usual dizziness, nausea and eye/head pain. The difference with those glasses off make it seem like my usual issues aren't so bad Thanks for everyone's help. Hearing from you all... as Sophie said I don't feel ODD! On to my new script... distance only. futurehope, I feel badly about your $400. I got my glasses at COSTCO and they are replacing my lens free-of-charge. They are even going to take money off if these other lens are less money. I'm off the progressive lens roller coaster... merry-go-round... uh.... torture device... Bshert
  11. Hi Everyone- I have worn glasses for distance most of my life. My script has been fine since my dx with POTS in 2006. Now I thought that I would take that dive into progressive lens (like bifocals without the line)because I'm about that age.... I've been taking my glasses off to read for quite a while... I'm going crazy trying to get use to these things! In focus...out of focus... I'm wobbling around anyway and now with my vision wobbling around with me I'm having a hard time getting around. Has anyone gotten progressive lens? Do people with dysautonomia ever get used to them...I'm so much more dizzy... The script is correct... I can't stand this! Bshert
  12. I have gotten floaters since I was a child. The ophthalmologist said that many people have floaters. He explained that the inside of the eye is like a jar of marmalade with pieces floating inside of it. Some people are able to see those pieces. As for the bright spots, I'm unsure that those would be floaters. My son has started to complain about seeing a light. He compares it to seeing the flash in his eye after a picture has been taken. I'm taking him to the ophthalmologist for a "slit lamp test". We have very hypermobile joints in our family and may have connective tissue problems. Thus, we want to make sure that their are no problems with his retina. I have POTS and am starting to go for testing for EDS. My son will have to go for testing also. Bshert
  13. Hi Ernie- I don't take Cymbalta, but I do take Effexor. I am weaning myself off. You cannot stop "cold turkey" or you will feel awful! I am weaning VERY slowly and I am still getting dizzy with it. I also am getting these "brain zaps" from downing the med. Nevertheless, I am down from 150mg. a day to now 37.5mg. a day. It's been over a month. I'd ask your doc. how to wean off or ask a pharmacist. There is also good info. on weaning off meds. online. Good Luck! Bshert
  14. Mayo prescribed it for me because my esophagus would seem to just "poop out" and stop working. I had a lot of chest pain and nausea. The Mestinon was great for me. I eventually was able to come off of it after about a year.
  15. Hi- This is my first time posting. I've always been reading the forum discussions, and now I thought I'd try a post. I hope I'm doing this right. I was dx with POTS at Mayo in Sept.'06.It's been an up and down ride (of course...and literally!) The only meds. I've remained on right now are Effexor and Klonopin(at night to sleep).(Off Midodrine and Mestinon now for 8 months). My doc suggested tapering off of the Effexor to see if it would help with my fatigue. I have been slowly downing my dose all month from 150mg a day until now with a dose of 37.5mg every other day. Problem is...wow! I'm light-headed and dizzy much more than usual! Can't drive... it's hard to function. I have three kids... one with autism and I'm really having a hard time. This is almost like when I initially got sick. My question is...Has anyone ever come off of Effexor with lightheadedness like this? I don't know if my symptoms are from the withdrawl or the POTS. I'm having no problems with anxiety or depression with this low dose, but the brain fog is killing me! Should I try to hang on to see if the dizziness goes away after withdrawl is complete...whenever that will be... or maybe my body just needs an SSRI to function? Any thought? Thanks everyone- This forum has been great for me... not only the helpful suggestions, but knowing that I'm not alone. Maybe I'm ready now not only to post, but to answer some posts and try to give back...
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