LMG

Aussie oh- Thanks. I will revisit the idea of midodrine....I have some NMH too and it is the fatigue and nausea and lightheadedness and Migraines that keep me down. You gave a great explanation of how it helped!

Julie- I feel the exact same way. My endo and neuro want me to try midodrine but I feel very uncomfortable. I don't want bradychardia as I had bouts of that. Also, for me, I had an abrupt onset of POTS after taking a migraine med. I ended up in the ER and never got better, so I know that a drug can make me very ill. And I have never taken many meds in my life either. I think if I could understand what midodrine might do for me, I would be more open to it. So maybe Aussie, you can tell us how it helped..with what symptoms, level of function etc. And did you have very low BP, fatigue etc. I think most of us with POTS feel ill much of the time, that we are afraid to jeopardize what we have left.

The health food store color product smelled even worse to me than the regular. I sometimes feel sick after hair coloring. I will only have some highlights and some grey colored. No all over color and I have found someone to come to my house as I think the salon sink was really bad for my neck and headaches and POTS. It is a big pain to do it, but like so many above, I just don't like the grey. It is aging and makes me look even more pale.

Fantastic! Great news and so nice to hear about your progress!

I haven't given Riboflavin a good try. Attempted to for a week or two when I was having a bad round of headaches and couldn't tell if it made them more frequent. Anyway, I have researched it along with other natural treatments for migraines. If you try it, you are supposed to give it about 12 weeks to see full effects if it helps. It is a mitochondrial enhancer. Other supplements used to treat headaches are magnesium (at least 400 mg a day), COq10 (100 mg 3x a day), herbs such as feverfew and butterbur, and sometimes Omega 3-fish oil supplements. If you google Riboflavin (or B2) at WebMd and search migraines/headaches, you will find some patient feedback. Some patients said they found better results with divided doses throughtout the day. I am trying magnesium and feverfew now but have the B2 on hand to add back in soon. Amitryptilline works well for some and I may try it too. My neuro thought I might have too much additional fatigue using it. We tried Pamelor (a similar tricyclic antidepressant) and I didn't tolerate that too well but no lasting side effects.

Great that you have answers and a direction! How did they determine low sodium- I am guessing not through a routine blood chem panel? Also, did they suggest florinef for the low blood vol and low sodium? Low blood volume diagnosed by a test? And finally, what amount of exercise did they suggest? Thanks, and again it sounds so promising for you!!

Now what, I am curious about the continuous o2. I just got a prescription for high flow for migraines but the MD wondered if the o2 should be at night too as I wake up with a headache just about every am. Is there a down side to doing it all night? And how do you do the O2 studY? Did it help w a lot of your symptoms? I know a CPAP would be too hard for me.

Electra, Did you find you had to do IV abx to get some improvement? Or was it incremental with different therapies? I have severe neck pain and headaches that are cyclical and my doc thinks it is Lyme. I have the Igenex test kits in the car, need to go to the lab, but like everyone else...I am sick of doctors and tests. I sometimes feel better on a day or two of Zithromax and then get dramatically worse which I guess could be herx. Like to hear more of your experience and yours too BadHbt. Thanks

I use all natural cleaning products and we do have the floor steamer...have had it for years and it is great. sanitizes, dries quickly! What kind of shampoos and conditioners do any of you use? I can't be near perfumes but haven't been so particular about shampoos and maybe that would help. Also, does anyone color or highlight their hair?

I am curious about it as well, as it is a favorite drug by many neurologists for migraine prevention. However my neuro says it will increase my already profound fatigue so she said I could only take it at night.

Ash- I don't know if I am correctly understanding your post, but if so, .5 is a higher dose of florinef than dysaut/POTS patients generally take. If you read back through older posts, many including myself take a half of a .1 and some go up to .2 but over time. Usually we all start at low doses and go up slowly. Maybe that would make a difference without raising your bp as high.

Dizzyde- Where is your acupuncturist? I have tried two, and feel like it could help as so many neurologists and acupuncturists state it is a viable treatment for migraines. Is there a specific style of acup he/she used- like japanese or more ear needles? You can PM me with his name. I take magnesium for migraines and am waiting to see if it helps with any aspect of them (frequency, duration, severity). I use a form called Magnesium glycinate which does not cause GI upset. Mg oxide or even citrate are more likely to do that. The ones bound to amino acids are less likely. I take 600 mg which is the suggested migraine dosage...I split it up so it is 200 mg three times a day. From what i have read, you need to give it a few weeks at least to see if it helps. The brand I use is Kal and so far no problems with it.

Aussie- I hope you can figure out the why of the headaches. My MD's all say it is because it gives you hypertension but it hasn't raised my bp much so that isn't the case for me.

I was very reluctant to try it as well. But finally, I did. I felt somewhat better on it, and maybe had one or two nights of insomnia and that settled down. Didn't gain weight, didn't have mood issues. But I do think it contributes to my severe headaches and am weighing it all out now. I started very very low as well.

I have always been sensitive to all probiotics. The one type I seem to be able to tolerate, in small doses, is Pro-Biotics. I think I got it at GNC or some place like that. It is not the multi strain, refrigerated type but again for me I think less is more. Sometimes I empty out half the capsule and take a smaller amount and I don't take it every day. Hope you find one that helps!

So glad you sound like you have found a great path for yourself! Wonderful and encouraging and you will surely keep healing. Can you answer if anything helped your migraines? And anything specific for the fatigue? Best wishes!!!

Charlotte, PLease keep us posted or PM me with any news, thoughts etc. POTS is bad enough but the migraine element is just so hard to deal with. I am sure I would have difficulty sleeping on the wedge but like your idea of using it when I am up in mid of night to use bathroom etc and quick to fall back asleep. Would like your observations on raising the bed. I have mine elevated and wonder if it doesn't take blood away from brain. I lowered it a bit a few months back...didn't notice much but it stopped that slipping thing you described. So my bed is about 4-5 inches up now. Thanks and hoping you will be headache free!!!! Lauren

I use Doctor's Best Ubiquinol. I get it online and it is much cheaper than any HF store. Ubiquinol is supposedly more bioavailable than Ubiquinone (both are forms of CQ10). Life Extension supposedly has good brands as well. What dose is he suggesting. I take 100 mg a day, and am thinking of going up to 300 mg per day for a trial for migraine prevention. Good luck.

My levels of D have been low all throughout POTS. I have tried D3 in many forms and just don't feel quite right on it. I am wondering if I should just give the prescription my doc gave me for 50,000 1u's of D a try. Has anyone taken that? Given all our sensitivities it kind of seems like a big hammer to use. Just wondering.... My other doc says go to a tanning salon, which I know has been discussed at length in other posts. Don't want to trigger any additional migraines, but then I have read online that high dose D can sometimes help. Any input or thoughts from you all is welcome!

Charlotte- I am going to try the ice packs near the bed. Ice doesn't help once a migraine has got its foot in the door but maybe it would prevent the escalation. If my headaches are left sided, I can mitigate them but if they are on the right side of my head or face, it is a full blown one. I feel it bubbling too, like Relax said. I have had the head of the bed raised for months now and I don't think it has helped. Would a wedge help more than that for us?

Angelloz- meds don't work for me either or I react. I don't even drink coffee but am trying that today for this headache. Looneymom- keep us posted about the D levels. As for all the good hydration suggestions- I am thinking....what about salt or gatorade at bedtime or in the night? I usually keep two glasses of water on the nightstand and don't drink much of them. Wonder if drinking a full glass at 2 am would do something. I just wonder what happens during the night for all of us? It is not environmental, don't think it is diet...and it all started with the POTS. Keep going back to blood flow. I don't think I could sleep sitting up but wonder about that. Or taking a med at night- like a baby aspirin or florinef at night? Just puzzling it out...keep the ideas coming!

For the past several weeks and much of my POTS, I wake up at about 6 am and am so ill. I have nausea, dry heaves, sometimes chills or tremors, and a headache. The headache can lift throughout the day or turn into a migraine. I had a few weeks without this, but still didn't feel well. I get a bit better as day goes on, and don't feel as badly at night. It seems like it is blood flow but I don't know what to make of it. I am on low dose florinef but went off for a while to see if it affected it either way and can't tell. Take some supplements like Mg, and Cq10 but don't think they are the issue. I wonder if it has to do with lying down or bp? Any ideas or does anyone else have this? t It is an awful way to wake up. I used to be a morning person btw. Thanks, Lauren

I can't take the BB's either. I tried gabapentin but didn't feel right so stopped and tried Pamelor as preventative but it made me feel more dizzy. I am going to a neurologist who supposedly specializes in headaches and she says there are more meds to try. Not sure what, but will keep trying. Preventing them makes sense to me, since nothing stops them once they arrive.

Can you all tell me what symptoms of yours the compression stockings help? I have a pair, and tried them last year and just felt weirder with them on. Do they help increase bp? Decrease tachy? Headaches,nausea, fatigue, OI? Maybe I would try again but not sure what the benefits can be.

That's a great story. I think most of us would love to hear what turned her around? Was she in bed and housebound and was there one or two things that got her up and out? Thanks for taking the time to post!!