LMG

I have been on a low dose (.o25 mg or a quarter pill) of florinef for a while. I have suddenly become dizzy and had some vertigo and ear pain, which is different from the usual lightheadedness and woozy feeling. I went to PCP and was told I have fluid in ear and need to take prednisone (and antivert). I get frequent migraines and have neck pain and of course hope the short course helps those things but basically I don't want it to have a bad impact on the POTS. I am wondering if anyone has taken both at the same time (again, it will be a five day course of prednisone) and if it was ok? I am calling the endo who prescribed the florinef. Pharmacist doesn't seem to know if its an issue. Thanks!

Ashelton, Is your adjustment gentle by the OA or is it a typical kind of crack the neck adjustment? I would love to go to that kind of chiropractor as I really feel it is the neck in my case.

Abby, I wonder the same thing. My neck is a major source of trouble. Many of my migraines originate from the neck.I had two cases of whiplash from car accidents and one was a short time before POTS. I had many chiropractic adjustments and thought I was doing ok until one last adjustment and one major migraine and I haven't been ok since. I am looking into cranial sacral therapy, going for acupuncture for months, and now am considering physical therapy. Nothing seems to put a dent in the neck soreness and migraines, which seem to trigger POTS symptoms for me. I am considering anti inflammatory supplements like Curcumin or Fish Oil as nothing else I have tried (Magnesium orally and injections) has helped. Also would consider nerve block or trigger point injections. Am hoping our fellow forum members have some ideas.....

Thanks for posting the links. My acupuncturist is very intent on my trying curcumin/turmeric for the frequent migraines I get. Anyone taking in on the forum? Any pros or cons? I am pretty sensitive, as are most of us.

I would like to be tested for food sensitivities. Like many others, I gave up caffeine, alcohol, additives and dyes, dairy years ago. But I do wonder about the things I still eat. So, can any of you post the name of the lab and the type of testing you had done? I don't want skin testing...as another poster said it proved worthless. . Will go GF if it shows to be a problem. Also, do most of you test positive for Gluten intolerance? Are the tests accurate? Thanks

For a homemade Gatorade try googling Gookinaid. A renowned CFS MD, Paul Cheney, has a recipe for it somewhere. It has a lot of potassium chloride in it (NoSalt at the store) along with Sodium. There was a product called Gookinaid and it is now called Vitalyte. It doesn't have stevia, sugar, corn fructose in it and it can be bought online in a canister. I tried it but the little bit of Vit C in it bothered me. Many folks on this site drink coconut water, not oil. It is easily found at most supermarkets and hf stores. Very high in potasssium- about 600 mg per drink. In spite of the sugar and dyes in Gatorade, it seems to agree with me the most of anything other than water.

I have seen this posted before but would like to revisit it. Many experts suggest raising the head of the bed several inches. I have had it raised several inches for 11 months and I am not sure it has done a thing. Also wonder if it causes more problems with migraines (blood flow?). What experiences have all of you had with this?

Hope it helps. Just read all the labels on that brand and don't get the one with flavoring or with added calcium. And hopefully they will have the little packets. I went very slowly and took about a 1/4 of the serving dose for a long time.

Elena, Not sure if you want to try mg citrate in a different form, but I have taken it in a powdered from. It is called Natural Calm and you put a teaspoon or two in water (warm is nice as it makes a bit of a soothing drink) and sip it. Two teaspoons contain 350 mg of Magnesium Citrate. I don't get it with calcium or any flavoring. Most health food stores have it and you can try it out in the individual packet size before committing to a large canister type of container. It didn't bother me and many vitamins do. I no longer take it as I don't think it had any real benefit. There is also a liquid Magnesium by Nutricology but it is magnesium chloride not citrate.

What is in the nerve block and is that an injection in the neck or head? My neurologist doesn't think botox is for me but has talked about lidocaine injected into trigger points.

Wonderful and thanks for the encouraging update! Sounds like you have worked hard for your recovery and congrats!! Did you have sudden onset POTS and for how long were you bedridden, if you don't mind answering? I think some of us wonder how recovery happens....over time - week to week, month by month? THanks!!!

Thank you for the great post and congrats on doing better and taking note of it too! I do wonder somedays....will I ever be able to sit at beach or just feel comfortable again and your post shines some light in that direction. Can you share with us how long it took to get rid of some of the symptoms..memory and migraines and fatigue maybe? Those are pretty tough and would love to hear how biofeedback or anything else helped and the timetable. Glad you can enjoy the outdoors again.

Thanks for sharing, Lemons and also Kim. It is great for those of us trying to work our way out of this to know that it is possible. Like the other posters, I would love to know a bit more...how long was your most severe downtime, and what started the trend to improvement and once you started to feel better, how long before you felt able to do more normal things (work, vacation, be outside, etc)? And CONGRATULATIONS!!!!!!

I got whiplash in a car accident last July and had more migraines and then sudden onset POTS in last sept. My neck cracks and pops so much now. And it is mostly right sided. Had a chiro adjustment in Oct, same as usual, but felt much worse from then on. Now I just apply a lot of heat etc and try to ignore the noisy neck but do wonder a lot about it as causative/ or contributing to POTS.

Yes, I agree. I had whiplash July 2011. Sudden onset of POTs a few weeks later. Then four weeks later had a chiropractic adjustment (with my regular chiro) and like Naomi, I had the worst symptoms for months after. My neck hurts a lot and I alternate daily with ice and heat and lotions like arnica, aspercreme etc. Tried PT and go to acupuncture but can't get too much better. I am thinking lidocaine or cortisone but not sure.... Have either of you found anything to help the neck and discs (mine are c5 and 6). It has been a long year and like Naomi wrote, I don't know how to fix this but think it is a huge player.

Thanks for the info, Suzi. I went to a different type of chiropractor last week- just for an exam. He said he wouldn't adjust my neck manually after I told him the story but that he could use an activator. It looks like a pen or something. I said I needed to think about it. Like you, I can tell the cracking by them would be too rough and set off more issues. I feel so strongly that doing something for the old whiplash from last year and the pinched nerve will help with my headaches, etc and am going to pursue it. I tried physical therapy in May and the traction was not good for me. They did give me some exercises and stretches...guess I should give it a more diligent effort. Also am considering an orthopedist....in hopes of a treatment. My GI system doesn't do well with NSAIDs or tylenol (or most meds) but I am looking into natural anti inflammatories. I am glad to hear you have good days and months..gives us hope. You said you were back to close to 90% at one point...how long did it take to get from very symptomatic to less so? Thanks! Lauren

I too had a neck injury (whiplash) a couple of months before POTS/dysautonomia onset. Now, several months into illnes, I have a lot of neck pain and headaches. Xray shows compression at C5 and 6 and pinched nerve. I had always gone to a chiropractor but my last adjustment was Oct 2011. Felt like that one really kicked me into bad POTS. I know I have to have some treatment for my neck but also can't get any good medical info, as Naomi stated above. I have tried Physical therapy, and am wondering about injections... Any info you all post would be of help.

Sounds interesting. Is there anything specific or do you just stand with your heels to a wall and arms at your side for as long as possible?

Rama- How much florinef and licorice are you taking? I am only taking a 1/4 of .1 of florinef and feel a bit better. Have a licorice extract in the house (see Baschetti protocol) and was under the impression not to take both together. Am trying to avoid migraines but clearly am hypovolemic. Can lose 3 pounds in a night. Hippychic- great question and I have wondered it myself . I didn't take any meds for several months as I felt too sick and now I feel as though I have to try a few things to try to function. Hopefully you will start to improve and will find something that helps you.

My POTS seemed to have started with migraines too. Last year they really accelerated and now I am pretty ill with both. I have Low D and have also just met with a migraine specialist. I debated between Pamelor and Gabapentin and think I will start the gabapentin (neurontin is brand name) this week. How long did it take for you to see changes with the Pamelor and did it cut down on frequency, severity etc? Any info is appreciated. Glad it is helping somewhat!

Puppylove- A lot of the POTS specialists treat teens and young adults and they use Florinef, often as first line treatment. I think they would have thought it through. My MD's all seem ok with it...I am not a teen either but asked a LOT of questions about florinef before starting it.

Hi All. Sudden onset last September. Heart rate is better due to a very tiny amount of florinef and low dose SSRI. I can get up out of bed and drive self to doc sometimes. That's about it. I have severe nausea, shakiness, fatigue and the worst is the migraines. I start to feel better and every week I get one and the whole POTS thing starts all over. Endo says increase florinef and take propanolol. I am concerned about fatigue and lowering an already low resting heart rate (in the 50s). Neuro says antiseizure drug like topomax or neurontin for migraine prevention. They both sound awful. I just want to be able to get out and do a few things...and feel semi normal. Anyone have any ideas? Anyone getting back to any level of functioning after a year of this? I am over 50 and am worried that this is it. Any ideas or encouragement please!!! Feeling pretty frustrated this week. Also I salt load and take potassium and b12. Magnesium didn't appear to help migraines.

My vitamin d level is 20. i guess that is low and I need to figure out what kind of supplements to take. Two yrs ago I took the prescription and it was ok. Now I have tried OTC and feel quite sick from them. Trying to figure that one out...and then hope to play some ping pong too. Glad you figured out some things that help, Kim. And hope you keep building on that improvement. Best, Lauren

Ashelton- I was hesitant to start florinef for months. Finally I had to stop salt for a test and felt so ill that I figured maybe that was a clue and it would be worth a try. I am only on 1/4 pill so far and plan to work my way up slowly. I think it helps me a bit so far. HyperPots- How much salt are you taking and in what form? I add a tsp over the day into liquids. Wonder if I need to increase that. And do you supplement with magnesium? I take Potassium.

Awesome Yogini....so great that you are contemplating tennis. Congrats! Got a question for you all.....does POTS kind of recede? I am in the first year which is severe but not as bad as the beginning months. In reading your posts, it seems like you all have been diligent and are now more physically active than previously. I know not everyone...but it is good to read about ping pong and tennis and I guess it sounds like some of you have found some fun again!!