LMG

I live on the Coast of NC and found it hard to find an MD. I was told in 2011 that Dr. Kline was out on medical leave. Eventually, I went to Duke Med Center and was diagnosed by Dr. Augustus Grant. He is an EP cardiologist. He knew enough about POTS- discussed florinef, prescribed Beta Blockers. He didn't do much testing. I didn't go back as I felt my GP would prescribe the same things and understood my medication sensitivities better. I debated Dr. Black but was not and am not up to the 4 hour trip to Charlotte. Well, actually I would have seen Dr. Lapp. Google Hunter-Hopkins Center in Charlotte and you can read about their approach. He is a leading MD in CFS/ME and treats fibro and POTS as part of the syndrome. He uses meds and supplements. Would be a different experience than going to Mayo or Vandy etc. More time with one doctor, less about research I would imagine. Wish there were more options! Lauren

Is this very different for resetting the ANS than raising the bed several inches? Do you feel better right away and would it help the variety of POTS/Dysautonomia symptoms- low bp, brady and tachy? Just wondering as it seems like a great thing to try....

I do like sandwiches too and hadn't thought about the corn tortillas. But again, I think we have to be carefuel about eliminating one food and adding in another that could be a problem. So Dizzy's advice seems really really good to me. Paleo might be the simplest and easiest. Just feel pretty hungry but going to give it a month. On day 3!! Good Luck Jacquie and Tracie!! and are you all eating oats? Feel like I need a bit of a carb, other than rice Lauren

I don't know the answer but I don't have celiac and am still going to try to go gluten free for a month to see if any symptoms abate. Mostly hoping migraines go away and maybe some relief of fatigue. I am not going to buy tons of GF packaged foods as I know they will have other ingredients that could bother me, but rather just eat proteins, veggies, rice and oatmeal. For anyone on the forum who is gluten free- how long does it take to notice positive effects and what can we expect? Its going to be a change, but it sounds like it can be worthwhile for many.

So many times it is the other ingredients...like the type of oil in the tortilla chips. I am thinking of trying gluten free diet now...starting tomorrow. Is oatmeal ok? Gotta have some carbs I guess. Trying it for migraines and tachy.

I understand your pain. I too have weekly migraines that leave me in such pain, and nausea etc that I am stuck in bed. No meds can stop them once they begin, or else I can't tolerate the meds. I go over and over my diet, and even stopped florinef in hopes of that helping but no luck. I am considering botox for the migraines but not sure it will help. I am currently trying natural remedies such as magnesium and am researching Feverfew, and Butterbur, two herbs that seem to help some with migraines. Of course, as you too well understand, I don't know the effect they could have on heart rate, bp and all the other issues we deal with. Will they vasodilate or constrict? I have a list of other things to try- fish oil, coq10, b2 but again, without knowing what causes my migraines, it is a shot in the dark. I wonder what causes the intense frequent migraines? Mine come out of nowhere. I will look into the Vit D,as suggested by looney mom. My levels are low. I am sorry you have to deal with it all. Hope this one relents soon. Lauren

Rachel, can you or anyone else tell me what the mito cocktail is? I am guessing it is supplements that affect mitochondria like COq10 etc? Would like to know what they are and how it helps! Glad you found some relief with it. Lauren

I was just asking my acupuncturist about ALA and she too said Pure Encapsulations is a great brand. What does the ALA do for you symptoms?

I am getting increased headaches and not sure it is from florinef but have thought of licorice. After researching it, I ordered Allergy Research Group. It is a gooey, molasses type consistency and has 1.5 grams of licorice per 1/4 teaspoon. I have not taken the plunge to try it...it too can cause headaches, and potassium loss (and of course Hypotension which is not a problem for some). Biggest concern is what dose, etc compared to a drug. Licorce cannot be deglycirrizhed or you will lose the aldosterone type effects. Good luck, and keep us posted if you go the compounding route for florinef. I am interested in that too.

Bren, So sorry about the difficulties from Florinef. I too am on .o25 (1/4 pill) and was told there couldn't be any long term side effects. Have you been on the florinef a long time?

Looneymom, thank you so much for all the info!!! I will start to check my bp and see the correlation. Does it go up fairly close to the time you take the salt or is there a few hours delay or a one day delay? My D is low and my NP suggested tanning since D seems to disagree with me. Headaches are frequent and I can't tell if florinef makes them worse. You have given me some good ideas. So he takes salt in the evening..is it stimulating or does it effect sleep?

I too was wondering if salt, fluids and florinef made a difference, but when I slack off, I think I do feel worse. How much salt are all of you taking in? I measure out a tsp of salt in the am and put 1/4 tsp in water/gatorade throughout the day. That translates to about 2500 mg extra. I wonder if more would be better? The salt tabs were not good for me.

I have played around with my salt loading for a long while. I know I have to have it but can't tell what level is best. I currently measure out a tsp in the am and distribute it in water/gatorade/food throughout the day. I guess that is about 2500 mg of sodium. Some of you seem to take a lot more. Do you notice benefits within a day or so? Anyone see any negatives? I can guess GI symptoms, but does in increase headaches, fatigue etc? Or does it help with OI? Do you take it all day long and into the evening? I usually stop about 3 pm but maybe it would help to have it at bedtime too?? Just wondering....I take florinef too.

I know several CFS/Fibro patients who have been on long term antibiotics and found some relief. Some have followed protocols for chronic Lyme, others for mycoplasma or chlamydia Pneumonia (after Garth Nicholson published protocols and info on Gulf War syndrome). Some followed the Marshall protocol, which is a bit more controversial as it requires avoidance of sun and all vitamin D including foods in which D is high. While no one I know is cured,they would not even consider going off the abx (usually minocycine,doxy, or zithromax), so it may well be that a pathogen is behind some of our symptoms, some cases. Yes, there are risks, and I am not advocating for or against, but I agree that it is worth looking into.

Hi All, Seeking some wisdom and advice. I have been on a low dose of florinef (.25 or 1/4 pill) for several months. I think it helped with the orthostatic issues to some degree and I feel it has helped me a little in some other ways but I am always wondering if it has made my migraines worse and more frequent. Had a horrid one two nights ago and still recovering. They are longer and more severe. I can raise the dose or go off it for a bit. Am leaning towards every other day and then skipping a week. Did anyone totally crash after doing that? Anyone figure out it was causing problems? Anyone go back on and do ok again? Not good with meds, as most of us on here so hoping to figure it out! Best wishes to all. Lauren

Seattle Rain- Do you feel better from tanning? Or does your blood test show a higher level of D? I have tried lower doses of d3 and tried again yesterday. Even 400 mg made me feel really dizzy. The first time I tried it in Sept, I felt better for a week or so and then felt dizzy and had some vertigo. Couldn't believe it was the D3 but this is the third time it happened. I tried a liquid emulsion and then a dry tablet. Does anyone know if D2 (the synthetic prescription form) would be easier to tolerate? Thanks for any ideas- I have severe migraines with POTS and have read that low levels of D are found in migraine sufferers. Read somewhere online that D and calcium supplementation could help with migraines.

I too have tested for low D and just got the script for the high prescription dose. Seems like D doesn't agree with everyone and wondered what symptoms it helped or if it caused side effects.

There is a book called Safe Uses of Cortisol, by William Jeffries. Some of the alternative/integrative/holistic practitioners will use low dose cortef ( or try hormones like thyroid, dhea etc) when a patient presents with the kind of fatigue and myriad of other symptoms we have. I have a nurse practitioner lined up to see as I have heard she will use cortef and thyroid routinely. Also Dr. Teitelbaum , who treats CFS/ Fibro etc seems to use it...if you google him, you will find references to it. Great that you felt so good on it! Sounds like it's worth pursuing. I was on it for 5 days last month and did feel a lot better the last two. Went right back to baseline when I stopped.

Thanks Diamond. I take B12 shots...hadn't heard they were good for migraines. Tried B2 recently and think it gave me more headaches so I gave up (maybe too fast). I am trying Coq10 and take the ubiquinol form of 100 mg a day. Maybe I need to increase that. How is the Oxygen working for you?

Well this is not a new topic and I have read some old posts but still wondering a few things. I have frequent migraines which are not responding to anything. Preventatives I have tried have failed so far (due to side effects) and once the migraine starts, there is no stopping it (although I open to any suggestions as I am losing two or three days a week to these darn things). Tylenol seems to make me woozy and lowers the heart rate. Not sure about advil or aspirin. Are they ok with POTS? Magnesium is suggested for migraine prevention. I thought it was a vessel dilator so I wonder how that could help with a migraine. Also, does it lower heart rate a lot? My heart rate gets pretty low at night. Any experiences? Also, I am on a low dose florinef but it is not causing the headaches as I had them for months prior to starting it. It is time for me to increase it (from a 1/4 to a higher dose) and I am a bit worried about the headache factor. does the headache come from raising bp too high? I read an article by a CFS MD and he said it can cause "the headache from ****" but then you back down. I am wondering if anyone had any luck with florinef helping their headaches due to raising bp and increasing blood volume and blood flow. I am ready for something to help. finally, did salt loading trigger headaches in anyone? Thanks for your wisdom! I am just puzzled....

Diamond, Someone just told me that oxygen helps their sister with migraines and I was going to ask my neuro about it next visit. They said it stopped the pain. Have you found that to be the case? Nothing helps mine once they begin, and I am feeling so ill from them. Thanks for posting and glad it is helping your heart rate!!

Issie, Does Turmeric help with any specific symptoms? My acupuncturist wants me to take it for migraines (along with revestrol) and I just haven't seen the logic.

Diamond, thanks for the post. Very interesting. Nothing has helped me thus far, and this seems worth a try. I wonder if it works on migraines without the aura? Please keep us posted!! My husband ordered something for me called Acculife. It is an electric acupuncture system, with points designated for various ailments, migraines being one. I think it comes from Ireland. I will post if it does ANYTHING! He is more optimistic than I am, which is easier to be when you don't have these awful migraines.

I have been on low dose florinef for a few months and just had to take a round of prednisone last week for something else. I was nervous, but also wondered if it might benefit the POTS and migraines long term. I did start the first day with a tiny dose though, just to see if I could tolerate it. It was a 6 day course and I did ok, just had some insomnia a few nights. It did increase my appetite and one or two days I thought I felt better. Nothing lasting though.

I get about 5 grams a day. I measure it out in am and start by adding a quarter to half tsp of salt to gatorade in am. Then as day goes on I try to use the rest by salting my food. And once in a while have a another of those gatorade drinks later in day but not usually. I don't eat soy sauce or canned soups that are high in sodium as I get headaches from those foods. So, I do salt chicken, rice, meats and veggies heavily. I eat crackers, pretzels and tomatoes for extra sodium. None of my doctors really weighed in other that saying up salt and have at least 3 grams. Have you been told to take in 10 grams? Have you been able to get that much in?