Pots And Migraine Relief Through Supplemental Oxygen Intake

[sfthriller]

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.

[SarahA33]

Hi, Sfthriller,

Welcome to the Forum!

I'm so sorry to hear you experience such pain. I run a migraine and headache support group at a Neurological Center here in New York and one of the Physicians was speaking about Cluster Migraines a few months back. He said that it's one of the most painful conditions known to medical professionals. Oh my goodness.. I remember it took my breath away to hear that. His treatments were Verapamil, (or calcium channel blockers if you can't tolerate that), fast acting triptans (like imitrex nasal spray or the injections), and oxygen, which is great that you have that at home.

I have migraines at least 20 days out of the month and I've only used oxygen in the ER for treatments but its been helpful. I've also passed out from the pain before and from POTS in general. Do you experience low BP on a regular basis?

IV fluids are also super helpful, have you tried those for the pain?

Sarah

[DizzyGirls]

Hi sfthriller,

I live in the Bay Area, too. I would be interested to see if the oxygen helps you. I don't know anything about it, but my daughters have been fighting vertigo (they have disautonomia) continuously for about 6 years, they are teenagers. My youngest daughter had a pneumomediastinum (blister on her lung that burst and the gases from her lung were seeping into her media stinal cavity making her skin very puffy and crinkly) and the treatment for that was high concentrations of oxygen for about 1/2 an hour every day until all the puffiness and crinkliness (is that a word?) went away. It took four treatments, but it worked wonders. Let us know if you see any improvements.

Dizzy Girls

[sfthriller]

@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.