sfthriller

@Knellie I've had four spinal taps, maybe more (and several blood patches in attempts to find/fix a leak). My pressure is usually normal but I have high protein levels every time. No one can figure out what that really means. I think it's worth asking your doctors. I was seeing a doctor at Stanford whose specialty is fixing spinal leaks. He treats a lot of patients who were incorrectly diagnosed with POTS when in actuality they had a spinal leak the whole time. This is a video of him talking about that, it's a long one.

@Pistol Thanks for the info. First what's HPOTS? I googled it and nothing shows up. Vasospasm marks lots of the boxes for me. I'll run it by my doctors and see if I can get some tests done. I've had several scans and some vascular scans (those were years ago) and everything normally comes back normal. I have not tried calcium channel blockers. I have pretty low blood pressure as it is. Gets lower when I stand. So that probably wouldn't work for me. My doctors have talked about ports but are weary because of the potential for infection. How long have you had a port? How often do you replace it? Have you ever had any issues with infection?

I've had POTS since December 2011 and have had headaches every single second of every day since then. The location of the pain and intensity of the pain changes by the second. Sometimes they're unbearable, sometimes mild, sometimes the pain is super intense all day long. Like you I also have extremely cold feet. I wear very thick wool socks all year long. I do have tachycardia. At one time or another I've tried the drugs you have tried. And like you, nothing worked. I've tried migraines specific meds like amovig and nasal injections. As for exercising I can really only do a recumbent bike. My goal is usually 45 minutes, sometimes I can do that with little rest, sometimes I'm resting every 5 minutes. Sometimes I can't do more than 10. When I started on the recumbent I'd do 10 minutes, then moved to 15, and so on until I could 45 minutes with little to no rest. I don't exert myself too much. Oh and swimming I've found is really good. I have significantly less discomfort swimming than any other form of exercise. Wondering if your headaches are worse standing? If so, that might help explain why you feel worse exercising. My tend to be, so one theory was that I had a spinal fluid leak. several blood patches, MRIs, CT scans, and a MRI myelogram later, it was determined I do not have a leak. But a small spinal leak could be causing your issues. The only thing that has ever really helped was IV fluids. For the last 9 years I've been drinking as much water as I can and increasing my salt intake like crazy. The IV gave me several hours of relief (not 100% better, but I could function so much better). So if your local doctor can give you an IV of fluid (saline) that may help. It seems to get better each time so maybe see if you can do it 2-4 times within a months time. I've tried so many things, so if you have more questions feel free to ask.

@Pistol Do you know what doctor your sister went to? I live in the US and have seen doctors all over (Stanford, Mayo Clinic Phoenix, POTS treatment Center Dallas). Still suffering everyday, it's been 6.5 years with POTS.

@WellBren Did you end up going to the Treatment Center? I've been suffering with POTS for 5.5years and I'm actually visiting the Dallas area more now. So I figure I should check the place out.

Hi there. I've been diagnosed with POTS for over 4 years and just last summer I was awarded social security disability. They denied me twice, stating that I still had use of my legs and arms. I responded that my arms and legs often get numb especially if I do anything that require me to get out of my bed. They also told me there is medicine I can take. I take a lot of medicine and that hasn't fixed me yet. I know the medicine allows me to do some things for without it I wouldn't be able to get out of bed but I still have lots of trouble with daily activities. Eventually they summoned me to appear in court and by that time I hired a laywer who deals specifically with social security disability claims. They did a lot of the paper filing for me which was great because reading one page of a 20+page document gives me a migraine. They prepped me for my appearance in front of the judge. It's a set fee that they take out. I'm not sure if I would have gotten it without them. I must add that I had been to the Mayo Clinic, several local doctors and specialists, and was currently going to Stanford. I had hundreds and hundreds of pages of medical tests and dr. notes stating my inability to work because of the symptoms I had on a daily basis. That's the key; proper documentation. And a Doctor (or multiple doctors) stating specific reasons why you can't work and why you are disabled. Best of luck.

@sarahA33 Thanks for the information. I haven't tried any iv treatments. One nurse practitioner I brought it up to said it doesn't work but I'll bring it up again to my doctors. I do have low blood pressure compared to what I had before i got POTS. But it's hard to read it now-a-days because I'm taking so much salt and the meds I'm on. If I don't take my medication (which I've done once because the doctors needed to test me off of drugs and another time I forgot) my blood pressure was pretty low like 96/76. My typical range is 109/70 to 117/80. My heart still sky rockets when I stand. I had a bad fall the other day. Normally I feel light headed and start to get blurred vision and can safely bring myself to my knees. But this time I couldn't control it and I hit the ground hard but I wasn't unconscious. @DizzyGirls I've been using the oxygen before my little workout routines, after them, on the onset of painful headaches, and as precautions to leaving the house or doing something outside of my normal routine. I haven't really noticed a dramatic improvement for myself. Over the last week and a half my headaches have been more severe. The pain has also been slightly different. I have had more dizzy/vertigo/ligh-headed spells than normal. But I was off my normal routine and diet for about 4 days. I think I may look into a portable tank because it's when I'm away from home and my normal routine when I get the symptoms most similar to high altitude sickness. Thank you both for the input. If anything changes (success with the oxygen) I'll be sure to spread the word.

It's been over three years now that I've been dealing with the symptoms of POTS. I get it all. I'm unable to work and I'm on social security disability now. I've been to the Mayo Clinic in Phoenix and I'm currently seeing several doctors at Stanford University. I've kept journals of my symptoms on and off again throughout my ordeal. And I've tried pretty much everything to make my symptoms manageable and less severe (various medications, acupuncture, increase salt intake, increase water intake, compression socks, smaller calorie meals spread throughout the day, early sleep time) I use to be really fit and active outdoors. I tell my doctors that my everyday symptoms most remind me of climbing a high peak like that of Mt. Shasta or Mt. Rainier where oxygen is low and physical exertion is high. I use to get headaches, nausea, fatigue, I'd be unbalanced, and I'd sometimes get blurred vision when up above 11,000 feet or so. Now those symptoms happen every day at sea level (San Francisco). I always have a headache, never goes away, but the intensity changes. Some are long lasting rolling/throbbing pains while others are short bursts (ice pick headaches). A couple of years ago I read about cluster headaches and how they're worse than migraines. The only thing that ever worked was the use of oxygen. Knowing this and how I use to feel up at high altitude (where oxygen is less present) I thought it made sense for me to use oxygen. So I've asked my doctors for it and finally I have a tank at home. My questions: Has anyone else tried oxygen for migraines? How about POTS in general? Or other specific symptoms (light headed, passing out, abdominal cramps, balance issues, vertigo)? Did it work? What is your intake (i.e. 10 liters per minute)? How long do you use the oxygen? Do you use it regularly regardless of the symptoms present (i.e. every day for 10 minutes at noon)? Thanks for any input.