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]

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]

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]

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 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]

Sounds like you are a tricky case. I am too. The thing is that neck problems, POTS, csf leaks and chiari can give similar symptoms so I understand that you are hard to diagnose. If you think that it is something with your neck then a MRI and maybe a MRA of the neck might be a good idea.

One thing that concerns me is that one of your NS said csf leak; this means that he saw some evidence on the MRI, or?

If so, then you shouldn't just wave it off but actually get a third opinion on that, I think.

Please keep us updated, I want to hear where you land in the end.

Wish you quick relief!
/Ball

[bean418]

So complicated situation.  I was perfectly fine my entire life.  No issues.  Then comes 2010.  Sinus infections March, April, May & June.  Lots of antibiotics.  

Later in June had dog at park with leash wrapped tightly around wrist, she went to charge after something and being so closely attached she yanked hard which inadvertently snapped by head back then feet went from under me and straight down on butt.  Instantly received dizziness, lightheadedness, blurry vision, weakness, etc.  Went home and lay down.  Can't remember if it was next day or 2 days later went to ER they dx dehydration.  Apparently not because I remain with these symptoms til this day and believe me I can't possibly consume any more liquids then I do on a daily basis (POTS).

Instantly I was unable to withstand hot showers or the heat which was pretty alarming considering I only took showers with ALL hot water and was  a sun worshiper.  Washing my hair in the shower completely fatigued my arms as well as myself and needed to recuperate for seems like an hours from shower.  I understand POTS could do this.  However, reaching above my head is a problem, anything that takes strength is a problem and will cause instant weakness and take days to recuperate.  

When this happened to my neck every day I would get a drainage from my nose like a faucet running.  Didn't think much of it other than it was odd and probably allergies.  When I wasn't getting better I went to an ENT to see if maybe I still had sinus infection from months prior (since I have never been sick in life....didn't really know how to handle it so after a million trips to PCP, I ventured away from that office).  

The ENT instantly gave me a vial and asked that I collect the fluid.  At this point it had been going on for 4 months.  Everytime it would happen I couldn't get it collected as it was random timing.  He was concerner it was a CSF leak.

Last year I went to my 3rd NS.  His "theory" was that the dog snapped my neck so hard (it was very had and you could hear the snap) it caused a small spontaneous CSF leak which herniated the cerebellar tonsils, which would be an acquired condition.  Sent me to a different NS who said no and sent me to ENT for vestibular testing.  Of course, I passed that test.  The ENT was concerned and requested I take all my studies/films/cds/reports to him.  He had a neuroradiologist read my reports and is still sharing my information with colleagues.  Will see what happens.  At least he was concerned, trying to help and makes an effort which is more than can be said for many drs.

I fully comprehend POTS, I fully comprehend migraines.  Migraines is typically my dx by drs. with the newly added POTS.  However, I disagree wholeheartedly that there is not a problem with my head/neck somewhere because my symptoms are exacerbated by positions.  Meaning, I can be fine but the minute I look up at the sky, plane, etc. my symptoms come on big.  The same goes for turning my head to the right....big problems.

Told PCP I think somthing is getting pinched off.  They agree but now have to endure 2 more testings that my insurance is not going to pay for.  But, I will eat that cost and get it done.