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.

[bean418]

I am not sure he saw anything on the MRI just that it opened his eyes to a possible situation when I mentioned the nose running like a faucet.  The NS he referred me to said NO.  

Definitely getting another opinion.  I have been to more NL that it is ridiculous.  The next NS is well known.  I will try him as well as Chiari Institute in NY.  

I just received referrals for the weight bearing MRI as well as the CT w/extension.  Will get these done this week hopefully.

So in your case did they say no Chiari or any mention of the cerebellar tonsils?  

The last MRI I had was after being admitted thru the ER and the radiologist did not mention the tonsils at all.  Odd, considering the other 4 MRI's all have the comment.  I should call and ask them to compare....which is what they should have done to begin with considering it's all the same facility, smh.

I hate to get ANOTHER CT again because I have had so many scans but I suppose I have to do it.

I was dx with vertigo in September however I do not have vertigo...according to a NS consultant it would be more of an instability issue.

Thank you...you as well.

[Ball123]

I have no chiari according to the radiologist. I just have the chiari symptoms.
It might be migraine, POTS, csf leak, chiari zero, arteriovenous malformation, neck problem, etc. Honestly, I don't know how we will get through this. I guess we just have to treat one thing at a time until something helps.

The chiari institute might be a good idea. I am also very interested to see if your symptoms will go away with the POTS treatment.

Have you tried any migraine treatment?

Some time ago I noticed that I felt better after hand standing. Now I can't do this anymore because it feels like my head will explode but anyway, keeping my head low helps me.

[bean418]

I have tried Amitryptyline and Nortriptyline which leaves me entirely too groggy too long (1pm from minimal dosage night before).

Zoloft, Paxil, Lexapro....terrible.

I have found that SSRI's can lower the blood pressure which would probably be why I felt so terrible trying them.  On the other hand they say SNRI can slightly help increase blood pressure.

Topamax and Zonegran were tried recently.  Topamax I can only tolerate 6.25 which is such a small dosage and Zonegran 25mg (supposed to be childs dosage) left me 5 days later in my PCP's office getting IV fluids and I had a migraine from hell on it all 5 days.  As soon as I stopped it the migraine left.  Discontinued that medication.

Spoke with my PCP about Effexor since it is supposed to work for migraines, blood pressure, menopause.  I definitely have acquired anxiety because of all of this and outside of the above attempts...that's all I have tried.  

Wouldn't it be great for Effexor to be a cure all. Unfortunately after the ridiculous reactions I have to meds....I am scared about trying anything anymore.  

Still waiting on NL to contact me to address the migraine treatment that we need to get back on.  

Fludrocortisone gave me a worsening migraine and my understanding from the EP was that people with POTS likely have migraines due to the blood pooling in the legs and not getting to the head.  So maybe your handstand was giving you blood back in your head.  If I did a handstand I would probably be in the ER, lol........actually seriously, Ha.

I just went to dentist today and really not feeling too great....I think everytime I go there the issues of head turning and movement make it worse for me.

[Ball123]

POTS sufferers tend to be very sensitive to medications, don't know why.

The feeling I got with the hand standing was that it was forcing my blood vessels to constrict not to explode my head:). But it was working. Problem is that you already need to be quite healthy to try it.

Maybe Effexor is the big savior then. Could also be worth to try some amphetamine-like stuff, like Ritalin for example. I think those drugs could be good for this kind of headache. Not sure I would dare to test them though.

Oh, I think it is important to start a new meds slowly and ease in to it, to avoid side effects as much as possible. Especially for us POTS people..

[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.

[Ball123]

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