Valsalva headaches and POTS

[Ball123]

Does anyone know anything about valsalva headaches and POTS? Can POTS cause headaches associated with straining, coughing, head movement etc.

I have googled a lot but I don't seem to find anything.

[Ball123]

I usually feel better from exercising as long as I don't over do it. But I can not jump because everything jarring hurts my head. But lifting weights and riding an exercise bike is ok. Unfortunately I only feel better momentarily, in the long run it has no effect for me.

I am from sweden and all health care is for free here. On the other hand it can be hard to get to the right specialists. I would like to go to a chiari specialist for example since I have so many symptoms mimicking chiari. But I don't think we even have cine MRI studies in this country. (I am not sure though). We are a small country.

But yes, it is very nice to know that all eventual tests and surgeries etc will be payed for.

It will be interesting to know what the chiari institute will say about your case.

[bean418]

I have had PT in the past as well as accupuncture and not really helpful.

It all depends on the day.  There are some days that I don't have energy to do much.  I have never at any moment regained the level of energy that I had prior to all this.  

Not sure that I could go to a gym.  Walking is fine but I can not run.  I have had a lumbar MRI recently which shows nothing.  Still waiting on a new Thoracic MRI approval but the insurance denied.  Lifting weights would not be okay since anything strenuous provokes the muscle fatigue to another level.  

Was told that aerobics is good for POTS patients however back when I was a gym member I could never withstand aerobics as I would get headaches from the jumping around so after 3 tries never attempted it again.

[Ball123]

But neck manipulation techniques does not help you at all? I am thinking about going to a physiotherapist specialized in neck problems. But I am not certain that my problems are actually from the neck. Could be though.

How ill are you? Can you go to the gym?

[bean418]

LOL, I have had a brain MRI 5 times, Cervical 3 times, MRA 1 time, Thoracic 1 time, Lumbar 2 times, xrays, etc.  

I have had more testing than my entire family has had in their lifetime combined.

Brain MRI w/CSF flow study...radiologist reports flow is fine, NS consultant says he has concern for flow posteriorly.  Apparently he sees something different than the radiologist.  He used to be a surgeon and seen it all so I would venture to say he is probably the correct one.

Did cervical/thoracic facet injections.  They took away migraines, dizziness and light sensitivity however the fatigue, weakness and other symptoms worsened...not sure if due to reaction to medication used for injections.

My PCP is a DO (doctor of osteopath)....he believes Chiari is the problem from 1st visit and is my big help in getting me into the well known NS.

Interestingly enough when I called to make an appt. with the cardiologist and asked to be switched to someone that specializes in POTS....they asked if my POTS dx was a primary or secondary condition.  Since no one knows that leave me in limbo.....again.  

From what I gather, my PCP is not convinced that I have many things but one thing which is causing the other problems....that would be Chiari.
Regular dr. would much rather put you on 20 pills per day as opposed to figuring hey....this person has been healthy their whole life than bam...15 different things.....anyone with a bit of sense would know that there is one thing that connects the dots.  Which is why I am very grateful to my DO.

I have a tonsil herniation of 3-4 mm....they do not claim "chiari" on any reports.  It is my understanding that Chiari Malformation is the structure of the skull and if my skull is not affected than the cerebellar tonsil herniation would be "acquired" from the injury/csf leak.  One NS suggests that if that theory (which was his) is correct than surgery would fix the problems since it is acquired.

Will see what specialist says in a few months.

[Ball123]

But what do they say about your neck then? Have you MRIed it? Gone to any osteopath or similar?

[bean418]

Maybe ...... I hold no hopes for any medications anymore.

There is a person in my area that failed the Tilt Table Study and was on fludrocortisone and came off.  Now takes Pristiq and Prozac/Xanex (can't remember which one of the latter).  

Seems to work much better for him.

Are you located in the states?

I am in Maryland and go to the BIG place here.  Was just notified today they have no one that handles POTS.  Very interesting.  They don't handle Chiari either.  Strange if you ask me.