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njfainter42

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Everything posted by njfainter42

  1. I developed POTS and NCS about 3 years after pregnancy...I take cymbalta (low dose) and will probably need it forever but I have greatly improved with the med even though I do have some fainting episodes with stress/exhaustion. I did become hypothyroid right after pregnancy which may have led to my POTS which came on with the stress of an unrelated surgery and accident.
  2. Before lying on the decompression table I had tried physical therapy (mackenzie exercises) and strengthening and also massage. Neither helped as much as the table. I also see a different chiro 2 times/month for the graston technique which is also done by some physical therapists. I had trouble with my physical therapy exercises in the past because I had so many flare ups where I could barely move, pain down my arms and just severe kinks. (I was hit from behind in my car a few times). The massage helped but only for a day or 2...didn't stop the flare ups from happening. I still do mackenzie each eve and pray I don't get hit by a car.
  3. When I started cymbalta it made me sleepy so I took it at night. After awhile I was able to take it in the morning without getting sleepy. It does help me a lot..I am not sure if my POTS is hyper though as I have not been told.
  4. When I was doing ab exercises I had what felt like an intense gas bubble which started below the bra line and rose upward...very intensely painful...a personal trainer came over to help me said she'd seen that in people doing ab exercises but never lasting so long...I was on the ground in intense pain about 15 minutes. Also a couple of years prior the same thing when I was just sitting around an hour or 2 after a workout. My dad called an ambulance I was so scared and then it went away. My doc sent me for a stomach type test where I had to drink a white chalky liquid....test came back negative so doc just told me to avoid ab exercises...never really figured it out...but now I do get intense chest pains that feel like gas and sometimes in my upper back. I also sometimes get that burpy problem in evenings sometimes
  5. Thanks both of you for posting. I bought the wrong type of licorice...I am going to look for the glycyrrhize type to try out. My skin isn't that dry...not sure what the itch problem is about but I guess it might not be related to POTS
  6. You found Zoloft stimulating? That's odd. I'm on Klonopin, Zoloft, and take Ativan as needed. I still have bad anxiety sometimes, but at least I can sleep and I'm not in a total panic ALL the time. My depression is still here too, but I've only been on meds for four weeks so I'm still hopeful. I hate having to take Ativan all the time. I don't know anything re:remeron but I take cymbalta which helps for POTS and affects norepinephrine and serotonin. (I am not sure if it raises the levels or lowers them but it works for my NCS and POTS) I find it calming but not everyone does. I don't see a psychiatrist...my primary prescribed my cymbalta after I asked him for it to try. My cardio suggested florinef and I told him I wanted to try cymbalta first. I think it is all just trial and error but you could give the drug another week or 2 before you decide to talk to her about a switch. I know some meds take longer to help you feel right. Also, keeping a diary of your symptoms so when you talk to her you have more evidence of your symptoms. Hope you start to feel better soon.
  7. I wanted to try licorice for increasing BP and energy. Right now I just use coffee about 3 cups/day to get thru the day. I had bought DGL licorice but remember someone here posted that that was the wrong type. Which type licorice do you take? Also I read that taking magnesium and potassium (4 pills, 99mg/day) and 400-600 magnes was a good idea for us? I do have the 99mg potassium but just have been taking one/day and one 250 magnes/day...does anyone know if it might be safe to increase this? On another topic, I have constant itching in arm behind elbows...going on about 7 months...dermat wants me to try to get off my cortisone creams...is this a normal POTS problem?
  8. I asked my endocrinologist re:D3 in 50,000 pills and he didn't think it was available in the U.S.. If I find it (in 50,000) to let him know as it is better for you than D2. Until I get my levels up I must continue the D2 since it may be the only way to get the 50,000 and then I can switch to D3 when lower doses are OK
  9. I have really low levels and take a couple of 50,000 pills also. Recently, my mom noticed that her prescription for 50000D was D3 and mine was D2. I did read that D3 is better and safer than D2 so I called around to find out if I could get D3 in a 50,000 mg script and 2 pharmacists said NO, 1 said YES, my doc just had to specify D3. I haven't been in touch with my doc yet but this was a thought since mom's D level has risen with her D3 script and mine has not with the D2.
  10. I used to get this when I overdid it...got overtired...I'd shake and need to urinate over and over again. I was told the ANS controls urination and the body just dumps all its fluids since the ANS is out of control with the episode and the body shakes to get the blood back to the brain. These episodes could last hours or days. With cymbalta I haven't had the episodes at all...I think the norepinephrine really helped me.
  11. Check out the therapeutica endorsed by the Am. Chiro Society http://www.therapeuticainc.com/#...It really is comfy b/c of the raised sides for side sleepers and the indented middle in case you roll onto your back
  12. I was advised by a doc with PHD in nutrition that I should take this. My health food store combines it with MSM which I am not keen on taking. Does anyone purchase supplements from a website...not too expensive they can recommend? (I already take Omega 3 which she recommended with a prescription for Lovaza sp?)
  13. I really like my therapeutica pillow...can find this online. It has raised sides for the side sleeper and a lower middle for back sleeping. I went thru many pillows before finding this one
  14. Do you take low dose naltrexone? I never heard of this...will ask my endo. I do take nature-thyroid as I had an allergic reaction to Armour (skin itch). Dr Weil likes Thyrolar better than Armour b/c no pig in it...armour derived from pigs he says on his website Canary Club is just another place to buy OTC adrenal tests. The tests are by ZRT (which is a good lab) but they offer the best pricing, better than buying from ZRT direct. No cost to join, just set up an account. Not all states allow OTC saliva tests without prescription but most will. The diurnal cortisol test is considered a good one for overall adrenal function. Your endocrine system encompasses both the thryoid and the adrenals to maintain your metabolism. Cortisol from the adrenals is necessary to facilitate the active thyroid hormone, T3 to pass from the blood into the cells. If you are deficient in cortisol you will have hypothyroid sympoms even when you suppliment with thyroid hormones. Therefore it's recommended to treat any adrenal problems before starting thyroid hormone replacement. Many do very well with natural thyroid hormone for Hashi's. And it's agreed that you need to get the replacement amount high to shut down the thyroid and help stave off the antibody attack. Stop the Thyroid Madness recommends that natural thyroid hormone be raised to the alleviation of symptoms, and that thyroid hormone level labs are largely useless for monitoring. Selenium is a good suppliment to take as it can lower antibody levels. There is also very good anecdotal evidence that the use of Low Dose Naltrexone is working for Hashi's by modulating and repairing the immune system dysfunction. Natural thyroid hormones also replace trace hormones your body needs for good metabolic function, like T1, T2 and calcitonin, which is good for bone health. Synthetic hormones are only T3 or T4 and not considered a good long-term replacement for thyroid hormones by many. Long-term use of T4 only meds can cause adrenal fatigue and actually make people sicker in the long run. This is, of course, the point of view by the natural thyroid homone proponants. The synthetic hormone proponants say that their way is best, and most mainstream endos refuse to even discuss natural thyroid with their patients. Unfortunately there aren't any good studies comparing the two in the long run. Natural thyroid is very cheap and there's no money in it for Big Pharma and the studies they have funded are very slanted and poorly done. And Big Pharma, in particular Abbott Labs, the makers of Synthroid, has pretty much hijacked the entire thyroid hormone market and funds all the major endocrinology societies, including the American Association of Clinical Endocrinologists (AACE).
  15. www.grastontechnique.com/ I can't tell yet whether it is helping but so far no negative effects and I am hopeful. I went 2/week for a couple of weeks and now I go 1/week. Only once they overdid it a little and I had more soreness than I should have had so my chiro has been gentler with the technique now.
  16. It was strange to see this post as I was recently trying to figure out why I have sudden flare ups in neck pain. I was rear ended about 5 times...I've been to physical therapy, acupuncture, massage, chiro, etc. When my POT/NCS was really bad I had neck pain that ran into my hands causing tingling. Right now I am trying the graston technique done by a chiro on my neck and low back/hip where I have pain. I am not sure if it will work but the goal is to reduce the severity of my flare ups. I have been diagnosed with fibro so I believe there is a connection with NCS/POTS. I love massage but it's so pricey...I do neck stretches and chin tucks each night to help the neck. When my pain acts up I think my BP lowers and I get tired. I think light exercise helps quote name='Broken_Shell' date='Jul 8 2009, 08:09 PM' post='117073'] My computer just deleted my long response ... here's an abbreviated version. Hi Suzy, You took the words right out of my mouth! I have very bad myofascial problems and pain and tightness in my neck and the base of my skull. I have told doctor upon doctor for years that there is some connection between my neck and my dysautonomia, but they just shrug their shoulders... and tell me that I am tighter than tight throughout my body, but especially in my neck. I was actually told yesterday by a podiatrist that he couldn't believe how tight the muscles and tendons in my feet and ankles are. I am one of those people who gets weekly myofascial and craniosacral work done by a PT, and it does provide benefit. Some days it helps my pain and tightness more than others, but the improvement is usually short lived or I make tiny baby steps of progress. I have been going for two years and working with a PT who I really trust and works well with my body. (You have to search to find a good practitioner). In terms of autonomic symptoms, I don't experience long-term changes in autonomic symptoms with the myofascial therapy, but I do know that for 24 to 48 hours after many of my appointments my symptoms are less severe and my body is in somewhat better control of itself. Also, I have mentioned on the forum before that using kinesiotape has helped me a lot. It is very effective at bringing down my muscle tension, and I have to constantly have it on several muscles in my neck and shoulders or the tightness is so severe that I am constantly dizzy and barely able to tolerate sitting up and holding my head up. Please feel free to PM me if I can provide you with any more support. ~ Broken_Shell
  17. I took a muscle relaxant recently that caused me to wake up in a cold sweat feeling like I was going to pass out in the middle of the night. It was a new one supposedly much better than the flexerill I had requested. I forget the name. Now I stick with naprosyn. I do have pain flare ups out of the blue. Some of the pain meds they took off the market were really good.
  18. I always had my worst episodes mid cycle which I think is when progesterone is released (with ovulation) which lowers BP. Good luck with IVF!
  19. I think a big worry for me is sometimes my pain/fibro really acts up and I need to be well enough to care for the little one. I am thinking of going for a Kaz adoption although an in-country 4 week bonding period is required and I am concerned re:crashing from the travel. DH wants me to just try to get pregnant the regular way but I am concerned my fibro/NCS may worsen after the pregnancy and I won't be able to care for the baby. Also doc wants me off cymbalta which I know will lead to lots of fainting during the preg. My inflammation markers are high and I don't know what preg will do so I think the overseas travel is a safer bet tho it will be difficult. Keep us posted if you are able to get pregnant. Also I think there are some drugs that may be safe like taking licorice might help. I like to meditate on chocolate fondue to relax...try this:)
  20. I have the same weight gain problems with cymbalta although perhaps not as severe. I was thinking of asking my doc...PC for a med to add like wellbutrin. I know people on SSRI and SNRI can add a little wellbutrin for energy...although I am going to also look at the meds others suggested in the thread I started on Meds for energy and weight loss. I know it is frustrating...I think they slow metabolism...
  21. I wonder if anyone has seen a doc...not necessarily cardiologist... who has helped then with pain and fainting. I notice my issues are linked. Thanks!
  22. Does anyone take a med to increase their energy and help with weight loss. I've been totally exhausted and since cymbalta I just can't lose the 15 LBS I need to lose. I hardly eat and am tired all the time. I do take armour thyroid (I'm hypo) but my thyroid levels are normal. Does anyone have advice..I want to ask my PCP to add either wellbutrin or ritalin or perhaps some med or stimulant to help me but not sure what might help.
  23. I don't think 8 months is that long for TTC so hang in. There are lots of ovulation info that might help you. Also if you check Korea, they don't require travel but I think it is the cymbalta that rules me out...other meds might be OK for them. It is frustrating but I do have a 7 yr old boy who is wonderful. I just long for a little girl and of course that is part of the problem. You cannot sex select with private adoptions or with a natural pregnancy. So I need to try a private adoption and accept another little boy (if I am even accepted for this as I am older with medical issues), or look at more countries for a girl. I am concerned that my illness could act up during one of the long in country stays or trips required by some countries and then after all that $ and paperwork we will leave daughterless. It is frustrating and I blame a major car accident I had had almost 20 yrs ago. I will keep you all posted as I am still trying to figure things out. I also know I can't lift and swing around a toddler due to pain issues so this might affect my parenting style but adopting a 2-3 yr old would be nice. I also love Hersheys Special Dark chocolate which I allow myself regularly even tho I need to lose 10LBS:)
  24. Ling, as I've posted a little on the boards that I am longing for a daughter..I have a biological 7 yr old son but fear my health will go down if I get pregnant again. I am looking at adopting but if I doesn't work out I will focus on enjoying him and get pleasure from nights out with friends/ the fact that I've stabilized right now and my problems with neck/back pain are better than they were. I am able to enjoy life without the regular fear of passing out in public. I haven't looked at surrogacy yet...the adoption research is so tiring but there are other choices. I was told Korea would not accept my condition but I know there are countries that will allow me to adopt.
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