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Valsalva headaches and POTS

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.
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Avatar universal
Have you had any concussions? I have all your symptoms!
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Upright weightbearing MRI completed yesterday....awaiting report.

CT w/ 90 degree turns reflects no instability but degenerative at C5-6 or 6-7 (can't remember).

Followup with cardiologist from Tilt Table Study....he claims the test is borderline and does not provide a definitive result.  Same as when I took the study in 2012.  Not doing this study again, it is ridiculous at this point.

Cardio recommendations - compression/salt/fluid (hasn't worked since 2012), if that doesn't work Fludrocortisone however he doesn't want me to start it until coming back from vacation due to possible side effects, if that doesn't work that go back to EP.  Hmmm....should have just stuck with the EP to begin with, saved my $40 copay and moved on.  

Explained I have appt. with dysautonomia dr. in January and he was like...why so far away.   Explained to him that he is the only one in my state so very lengthy wait and that he could call him to try and get me in earlier.  Not looking positive for him making that effort for me.  Will suggest to my PCP...he will actually do it for me.  Amazes me how some drs. are lack of help while others are more than willing to help (which are rare ones).

He has never had an answer for me and I don't think he ever will which is why I sought out the EP to begin with but PCP recommended I go back to him after episode this week.

How are you doing?
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Avatar universal
It is so strange that the neck mri's don't show anything. I have talked to people before with neck issues that didn't show up.

Maybe you should try to find a really really good neck specialist and give the physiotherapy yet another chance.

This with arm weakness when blowing your hair etc sounds like chiari to me though. But of coarse, I am not a neuro.

Let me know how the test go!
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Avatar universal
No, I don't think Florinef would lower intracranial pressure.  My question was if I took Florinef to retain fluid could that put too much pressure and cause further herniation of the tonsills.  Not the opposite.

I really don't understand the low pulse and POTS combination.  My appt. here with the specialist is October, lol or January if I don't like October :O

Migraines rx....amitriptyline, nortriptyline, lexapro, paxil....all of these made me entirely too groggy and so fatigued....probably because now I know that they all have the potential to lower your BP which is probably why I felt so bad on them.  Never been on anything longer than a week as the side effects become unbearable.  Topamax and Zonegran....same results as above.  The university here recommends migraine prevention to be magnesium and B2 (Riboflavin)  ....  the other university is magnesium, B2 and COQ10 with a migraine elimination diet.  The ER put me on vertigo meds once and I slept for 18 hours and kept falling over everytime I tried to get up.  Trashed those two rx.  It is not vertigo anyway so it was useless medication for me.

The only thing that will work sometimes is Ibuprofen 800mg.  Sometimes it  works and sometimes not.  Not supposed to take it though due to gastritis.  

Imitrex and the other migraine med make me sick so I can't take that either.  One time I took a medication, can't remember the name, it was high caffeine in it, it was a prescription med and it took the migraine right out.  It is highly addictive though so I didn't want to take it again.

In 2011 I had a migraine 24/7 from January until May when finally a neurologist gave me prednisone and that took it away.  It was horrible.  

No relief with any of them.  I do not dismiss the fact of having migraines but do not agree that if I turn my head left/right/up/down and receive weakness and other symptoms that this is a migraine.  Something is positional triggered.

I will just eat the cost and pay for the two studies that my insurance company has rejected.  Here goes 700.00 and I hope it shows something but wouldn't be surprised when it doesn't.

Pinched nerve or blood vessel treatment.....I have no idea.  Maybe they can just go in there and clamp it off or something, lol.  Seriously, I have no idea.    I am not afraid of surgery at this point.  Of course, I want to know that they know what they are doing and if it is the correct thing affecting me.  

2 Studies (hopefully next week)
Appt. (18 months away) with geneticist to rule in/out connective tissue/hypermobility

Too bad someone didn't come up with the geneticist idea 4 years ago.  At least that one would be done by now.

Weird how people can be fine then all of a sudden so many issues and not really know the cause or how to address/fix it.

Thank you....you take care and have a nice evening as well.




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Avatar universal
I don't know if Florinef is better than the salt tablets or not, so can't give any advice on that one. Didn't know Florinef lowered intracranial pressure, are you sure about this? Diamox is sometimes used to lower intracranial pressure but I have never heard of it being used as a migraine drug, except for the Driscoll theory. But it could be worth a try, at least for a few days to see if you get any relief.

Am I referring to the Driscoll theory? Well, yes I guess I am.

Actually, I don't know if anti-histamines is a really accepted treatment method for mast cell disorders. I think they use much heavier drugs usually.

I can not really say when it all started for me. I had so many things going on in that period: Back injury, neck injury, virus diseases, psychological problems etc. It is very hard for me to know what set it off. Maybe I always had small symptoms but this tough period made them blossom and stay?

I have very low pulse which is a really strange combination with POTS..

What migraine drugs have you tried? Have you found anything that gave you some relief?

I am not on any meds yet. The docs here are a bit slow;). But soon I guess..

I really hope we will find something that works in the end.

If it is a pinched nerve or blood vessel in the neck, how can it be treated?

Take care and have a nice evening:)
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Avatar universal
BTW, I was recently asked by a cardiologists office if POTS was my primary or secondary diagnosis.

There is something to think about !
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Avatar universal
The electrophysiologist that rx Florinef said my low BP is probably the cause of the migraines.  I asked him about taking Florinef and retaining fluid which could potentially cause more problems for the herniated tonsils (Chiari) and he said .... I have no idea what you are talking about.  LOL, at least he was honest.  

He also said he does not know if all my symptoms are related to the orthostatic hypotension.  Now....I have been dx with POTS which he may or may not have been aware of since he did his own 3 position BP test in his office.

According to the hospital my heart rate drops into low 40's when sleeping.  Also when I landed in my PCP's office 2 weeks ago and required IV fluids, he did an EKG and my heart rate was 50.  Considering I was very upset that I landed in his office (I was only there to drop off papers for him) and being treated...one would think my heart rate from being upset would have been much higher.  They said I looked terrible....lol, I know that I could not function property and was having a really hard time that day.  

Not sure if that was a reaction to the new migraine med I was on for 5 days or not, it probably dehydrated me worse and I also wonder if that migraine med is what caused me to fail the Tilt Table Study.  I was already on it for 4 days when I took the test.  Should have followed my instinct and waited to start the med but they all said it would be fine.

Do you take an antihistamine?  If so, which one.  

I truly believe for me it is a neck issue causing me all these different problems.  Not a believer that I had trauma to my neck and all of a sudden have a million problems.  Upon putting laundry away last night I put some one the top shelf so not sure if I looked up and caused the problem or again, anytime I raise my arms above my head....it's an issue that brings on the bilateral arm and leg weakness and new for a couple months....shakiness arrives with it.

Are you referring to the Driscoll Theory?

I don't know whether to convert back to the Florinef or stay on salt tabs.  Other dr. made a good point that Florinef is a hormone so why take it if salt tabs do the same thing....my prior NL was going to rx Diamox if Topamax didn't work.  All the current NL and PCP say no to Diamox.

Do you know when your problems started....like can you track it back to a specific moment?
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Avatar universal
Have you noted any effects from the salt pills yet?
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Avatar universal
Interesting. I must say though that I have heard that Forinef is widely used as the first medicine for POTS so don't distrust your doc just because of that. You can just tell him that you had side effects and needed to quit it. Nothing strange about that, I think.

If I can recommend you something it is to start all meds in very low doses and then slowly increase them. One good doc in my country said that many people start too high, get side effects and quit; and then they reject a possibly good working drug. So his tip was to ease into it. I believe in that. Especially for me because I get side effects very easily.

I have also been cleared by an ENT. I too had the sinusitis suspicions:).

There is something called mast cell disease that can cause pots. Usually they test you for it when you get your pots diagnosis. It is treated with antihistamines. There might be other possible connections too.

Do you have very low pulse too? I suffer from bradycardia which is a very strange combination with pots.

I think the situation is very unclear. Is it a migraine phenomenon causing the pots or the pots causing the migraine or are they just not connected? Or is it the neck or chiari? When I think too much about this it almost drives me insane;) haha.  
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Avatar universal
No not yet....I was rx Florinef (Fludrocortisone) by electrophysiologist and then original cardiologist wanted Tilt Table Study repeated.  Then a different cardiologist who went over test results said salt tablets, compression pants, 3 litre water per day.  Asked him about Florinef rx and his remark was that it is a hormone so why take something that salt tablets will give the same result.

Cardiologist who ordered Tilt Table Study doesn't even return calls to discuss results/treatment....very professional.  So I left the decision in my PCP's hands and he rx salt tablets.  

To make matters even better...the large facility that I went to for test informed me the other day that they don't have drs. to work with POTS patients so was referred to the facility where the dr. is that rx the Florinef, lol.  So now how the heck am I supposed to followup with a dr that rx me a med that I was taken off of to do a test then told to take something else?  That is going to be one interesting appointment.

I get the same problems with my head that you do.  I thought it was sinus but ENT has said several times that it's all clear in the sinus dept.

Have you taken any allergy medications?  A few years ago a cardiologist told me to take zyrtec and it made me to groggy....couldn't take it.  Switched to claritin and I don't think it had any effect...currently trying Allegra.  Had bad head pressure with migraine the other day so took it and it cleared up the migraine so not sure the relationship.  Need to start taking it everyday again.

I do not get results from big facilities so you aren't missing anything here at my location.
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Avatar universal
I get head pain if I jump, shake my head, cough or strain at the toilette, bend forward etc. It feels like my brain is loose in my head and bouncing around when I move.

The problem with health care here is that we are a small country so we don't have these highly specialized facilities that you have. And sometimes it can be a bit hard to access.

Have you tried midodrine for your pots?
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Avatar universal
So Sweden is like Canada for health insurance?

In the beginning they dismissed Chiari....my current PCP is the one who brought it up and I have gotten more headway with him in 1 year than any
other doctors including specialists during the first 3 years of this.  

Alot of times I am ok if I keep moving however like you, it is temporary.  Makes it quite disappointing at some point.  The other thing is again, I can walk track and be fine then turn my head in the wrong direction and that starts an episode of weakness, dizziness, etc.

Waiting on my approval for these tests.  There are only 2 facilities in my state that do the weight bearing MRI and not sure the insurance is going to authorize it.  The CT they want is only done at certain facilities as well.  Waiting on that authorization as well.

So what are your symptoms in that they relate to Chiari?



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Avatar universal
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.
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Avatar universal
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.

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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?
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Avatar universal
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.


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


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Avatar universal
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
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Avatar universal
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.
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