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