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Everything posted by Orthohypo

  1. Just checking some old posts about low dopamine txs and wondered how the CC visit turned out for you Sarah. I just saw Dr Shields (neurologist) there and he ordered a thermal sweat test (in a sweat cabinet). Did you do that one? Saw dr jaeger there three years ago and have been struggling. He released me because my cardio tests were all good. Anyway, just wanted to tell you about a dopamine supplement called Dopatone. I was low-normal in dopamine and no one suggested I supplement, but I read about on Potsgrrl's blog and it has been very helpful in a short amount of time.
  2. sorry - unintentional repeat posts! Was on phone and reply didn't appear to be working.
  3. Just checking some old posts about low dopamine txs and wondered how the CC visit turned out for you Sarah. I just saw Dr Shields (neurologist) there and he ordered a thermal sweat test (in a sweat cabinet). Did you do that one? Saw dr jaeger there three years ago and have been struggling. He released me because my cardio tests were all good. Anyway, just wanted to tell you about a dopamine supplement called Dopatone. I was low-normal in dopamine and no one suggested I supplement, but I read about on Potsgrrl's blog and it has been very helpful in a short amount of time.
  4. I got my doctor to agree to let me reduce the Florinef to see if it helped with the anxiety. I am down to 0.05 mg but it hasn't made a difference. I was on 0.1 BID before tapering down. If its helping your POTS, maybe the anxiety is actually a symptom of he POTS itself.
  5. I have considered it but haven't purchased yet. Read somewhere that the fascia tissue response will set in if inversion is more than 12 (?) or maybe it was 20 degrees. That would suggest the need for a table that can be locked into place at selected angles. Does anyone know of reliable non- sports store source? My insurance might pay for part of it if it came from a medical supplier, but I can't find any in Ohio that carry inversion tables. I would purchase from online but am leary about that. BTW my osteopath wrote an RX for one in support of my inquiry to help heal a herniated cervical disc.
  6. Diamond, you said it perfectly! I am so frustrated with not being able to plan ANYTHING. I had that exact thing happen where I ws about to get into the car to go to the health food store, thought I'd better have a sandwich first, then got an attack of weakness, anxiety and fake flu that I was down and out for over 6 hours! So for hose of you who have been dealing with this for a while, do the doctors just tell you that's how it's going to be? I'm still looking for solutions but sometimes I think it's not going to do me any good because things are getting worse instead of better.
  7. Oops, forgot to quote what I was thanking Rama for.
  8. Thanks Rama -I knew you would know! I'll have to look these up and learn more. If its not too much trouble and you can point me in some good directions I'd like to get some good info.
  9. Sea bands for nausea - acupressure bands for wrists. Compression stockings at 20-30 mmHg are manageable for me. Doc says higher levels are too hard to get on and create banding that actually cuts off circulation. I can't get through a day without mine! The video documentary by DINET on POTS on YouTube and the video of the Webinar by Dr Rowe also on YouTube. Yoga classes and yoga Nidra healing meditation (available online by Amrit Desai. He has a very soothing voice as opposed to another one I downloaded in an app.) once you do this meditation a few times it makes you feel like you have a perfect body! It's lying down, so if you can relax it's super easy to do.
  10. I would just say to try to get by with as little cortisone in the injections as possible. I had six in my cervical vertebrae in 18 months plus two (half the amount as the neck) in my shoulder. It made my anxiety really bad. Now that I can tell it's dissipating because the pain levels are going back up, I also notice I have less trouble with anxiety now. I can't stand the anxiety attack weirdness and weakness that knocks me flat. Maybe try it and then see if some of these other things might help. I don't know why the insurance companies in the US will cover that first. This week my new pain specialist is trying facet injections in the vertebrae with a local anesthetic to see if it provides relief. If it helps in two separate sessions, they will try to get nerve ablation approved. This is a drug-free approach which is supposed to last 6-9 months. I hope it works and insurance says yes! Anyway, the nerve pain gel is ketoprofen/gabapentin/bupivacaine 4%/5%/1%. The muscle relaxer cream is baclofen/magnesium/guaifenisin 2%10%/6%. The message on the phone when I'm on hold says the pharmacist can help with pain issues and to email him. Not sure if I'm allowed to put that info in the post so PM me if you want it.
  11. Dana, I am OI and when I take pseudoephedrine I feel much better overall. And it's a 12 dose so it lasts! I get the same effect after two doses of sumatriptan for migraines. I was just telling my husband tonight that once the migraine is gone I have more endurance to get through the day and I don't have my daily afternoon crash. Problem is my doc said not to take pseudoephedrine since I am on Midodrine and the max for sumatriptan is 6 per week. The pharmacist said if I needed a pseudoephedrine once in a while it wouldn't be a problem with the meds I'm on. The Midodrine at 10 mg TID just isn't helping much. I need to find out how sumatriptan works compared to other vasoconstrictors. Or maybe it's just adding it to the other meds that helps. Anyone have an idea about this?
  12. Puppylove, I know this is so frustrating for you and I'm sorry you are having to deal with this! Have you tried the Meet Others option on this site? If you're still in high school it would be wise to have a parent take you to a coffee shop if you do meet someone with dys in your area, but I'm betting there are other young people nearby who would understand and emphasize.
  13. Had the same "beautiful brain" comment from my neurologist when we did an MRI to see if there was something there that was causing chronic migraines. Sheesh!
  14. There are two types of patches that can be applied externally - lidocaine and Flector (NSAID) which avoid the systemic side effects of meds and cortisone. Having had max doses of cortisone and docs other than pain specialists tell me cortisone can make your body do crazy things, I am going to try my best not to do that again for my shoulder pain. (Also had cortisone for herniated disc, so much more than is given for shoulders alone.) There are also compounded pain relief gels and creams that I found out about here in the forum and asked my compounding pharmacy about. After learning about them, I asked my family doc for the Rxs. They are not as convenient as popping a pill, but are fast-acting and help. I can post the info about the ingredients tomorrow. Not sure where you are, but if you want to message me I can give you the name if the pharmacy. They also mail out.
  15. Anoj, my doctor says that most of her Hashi's patients do not do well on Armour. I think it has to do with the body attacking the thyroid more because of the natural T3 and T4 hormones from Armour in the system. She has me on Synthroid and Cyotmel. We try to keep the TSH down between 0.5 and 2.0 or else I feel lousy. I have not been on stopthethryroidmadness yet to see if this has been mentioned, but from my understanding you better MAKE SURE YOU GET THE NAME BRAND hormones! Generics only have to be 70% of the actual stated levels of medication and this is horrible for hormones! It's more expensive, but you can't afford to have aberrant fluctuations in your thyroid levels causing more complications.
  16. Ah! Is that what it is? I take mine in the morning and by afternoon my face/sinuses hurt and my ears are throbbing!
  17. Naomi, You make an excellent point. While I have had symptoms and related medical problems for my whole life, I didn't know what was causing it. All the doctors and procedures over the decades have been frustrating to be sure. But I've been a very active person even fighting through it all up until the last two years when I got knocked down big time. As for the workplace, I would guess there is nothing that prevents us from getting a wheelchair and putting the leg supports up. It's not asking for sympathy or belittling those who can't walk and absolutely HAVE to be in one, but that alone might help others understand that this is a medical problem. The lists of things we are supposed to avoid include walking a lot, going up and down stairs, standing for long periods of time. As teachers, we are required to stand most of the day and move around the room. My office is on another floor, so that means stairs. So since all public buildings have to be ASA compliant, we would be able to have access with a wheelchair. I believe it only takes a letter from a doctor to get a parking permit. Although I would have a bit of a moral issue personally with taking a handicapped space since I can still walk, the only other thing to do would be to drop off the wheelchair. park and then walk to the door/chair. I am considering doing this because if it helps me to keep my job, then it's worthwhile!
  18. Bustersacc11, My doc is supportive but she has tried for some of her other patients and at least in Ohio there are mostly denials for disability. She's had some patients trying for years to get it but once they send you to an independent doc, especially if serious tests like heart issues are non-existent, they deny it. I can apply for disability through my retirement system but again there is that third party evaluation required. Thanks for the info about the lawyers - good to know.
  19. Glad you're feeling better! The docs have told me to take 5-6 grams of salt and drink plenty of fluuds with the florinef. Lots of folks here take florinef plus midodrine. Where do you live that you have an autonomic specialist?
  20. Issie, is the Maca supposed to help with lack of libido? I got some for more energy in the afternoon but when I tried it one day I was really wired and afraid it would cause problems with my medications. I asked the doctor but she got onto other topics and I didn't get an answer that time.
  21. Belladonna can help with bladder spasms. I took it as a homeopathic remedy - don't know if there's another way as in capsules.
  22. My doctor just told me last week that not having estrogen and progesterone levels high enough can make dysautonomia much worse. She is upping mine since she's pretty sure I'min full menopause and estrogen is a vasoconstrictor. She said she has teenagers who have to take the pill all the time to stop their periods or else they just collapse for 3/4 of the day when on their periods. If you don't have migraines associated with hormones it might work for you! I'm nervous because I do, so even a tiny increase in estrogen caused more migraines in the past. I'm stuck between a rock and a hard place with the two issues!
  23. Racer, If I understand you correctly you tried to get help to go to college through your employer. You should go to a college Student Accessibilities office and see if they can get you funding to go to college or community college. They will also advocate for you while in college. I teach at a state university and we must make accommodations for those with special needs (students that is! I don't get to have that government mandated support!) I have had several students in my classes with disabilities, and one with Asberger's syndrome who was really quite intelligent (as most of you are). He will probably be able to graduate with a degree and obtain a good job with a decent salary. He is very good on computers and may be able to hold a job without having to do a lot of communicating with people outside of immediate co-workers. You could look into a career which allows you to have flex time or work from home as many web-design companies do. If your parents know you will be earning a degree, they may be willing to give you some time to get to that place with more support. Even if you do have to live in a group home, you could still be a student. And for those of you looking into disability insurance, you might also check on a mortgage disability policy. I'm trying to go that route since it looks like things aren't improving for me and at least it would help pay for the house if I lose my job. My doctor has had several patients who have had no success getting by that independent doctor requirement for government disability even though they can't hold a full-time job due to dysautonomia. As I understand the mortgage disability, there is only the need to have your doctor document the issue (I hope that is right! Just got it today and have to plod through the fine print.)
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