POTS and brain tumors

[porque]

Does anyone know if POTS symptoms can actually be symptoms of a brain tumor? I have a headache in the back of my head for like 4 days now...its very mild but scares the heck outta me. I have had a CT which didnt show anything but am still scared. I never heard of POTS symptoms being a sign of a brain tumor...maybe a brain stem tumor though and they are deadly and occur 80% in kids under 15. I just get scared cuz my dad had a brain tumor about 10 years ago, I dont want to go through what he did...I might not be a lucky as he was. He turned out fine. I pray that I am fine too.

[MightyMouse]

the only link I'm aware of is a pituitary tumor

[lynn]

what about pots and a pineal gland cyst? I have both...

[MightyMouse]

Pineal cysts are a common finding on MRI's and very rarely have any medical consequence--the occur often and are seen in normally functioning folks. The only case where it would be an issue would be 1) hemmorage or 2) malignancy. If you do a google search on "pineal cyst" you will see that it's considered an "incidental finding".

I happen to have a pineal cyst--it presented itself many, many years AFTER developing POTS.

There is NO research supporting a relationship between brain tumors and POTS (other than adrenal/pituitary).

Nina

[Guest GayleP]

I had a benign brain tumor, actually a cyst removed in 1995. Before the tumor I was really healthy, athletic and felt great. I have never been the same since the tumor. I developed dysautonomia post surgery.

The only connection to my surgery is that I was always a fainter. It's thought that because my tumor was really deep in the brain near the brain stem that the surgery and tumor caused my dyautonomia. My ANS was probably always a little messed up because I used to faint but it wasn't unitl the surgery that I got full blown dysautonomia. So I most likely always had a really mild case and didn't know it. If it wasn't for the tumor I might have never really gotten this sick.

But back to your question I don't know anyone else who posts here who has had a brain tumor. One other person who I met from NDRF had the same kind of cyst as I did and we e mail each other. She ended up not having dysautonomia.

Also if you had a CT you should be OK.

[Guest GayleP]

What kind of tumor did your dad have? If you are really concerned request an MRI. From what I remember brain tumor headaches are worse the morning.

[porque]

My dad had a benign meningioma on the left back side of his head in his cerebellum. He ended up getting a MRI becasue his neck was hurting. It turned out that he had a pinched nerve causing his neck to hurt; it had nothing to do with the tumor and he was lucky that his MRI of his neck caught it. They saw a shadow on his MRI and then did one of his brain and found it. Two weeks later he had it out. He is doing great now-a-days. His balance is a tad bit off and it hurts to turn his head too far around from th scar tissue but he is still my normal loving dad. Watching him go through his surgery was the hardest thing I have ever had to witness. It sucked. He was in the hospital 24 days cuz they caused a stroke by cutting a blood vessel to removed all the tumor. My dads tumor was huge...one of the largest his neurosurgon had ever seen...and my dad had no headaches...no major symptoms...a little bit off balance, had a tad bit of trouble swallowing, and couldnt feel hot or cold with his right hand. Strange, but they were so mild he thought nothing of them. I am just scared I will have to go through this too. I hope not and my CT scan was clear only 6 months ago...looked great! So I know I should not worry too much...it probably part of hypovolemia and POTS but I still get scared as I am never sick. My headaches seem better in the morning and come on with activity later on in the day. Thanks for your response. What kind of cyst did you have?

[Guest GayleP]

I'm sorry your dad went through such a rough time. Thankfully they caught it in time. I'm glad he has recovered for the most part. It must have been scary for you.

I had a colloid cyst. It was a floating cyst meaning not attached to anything and was located in the 3rd ventricle which is pretty deep in the brain. Like wiht your dad, they discoverd mine by accident. I was having tingling in my arms and legs and they did an MRI thinking I might have MS. My symptoms were not typical of a colloid cyst so it surprised everyone. Especially me.

They gave me two weeks to get the cyst out because it was blocking my CSF flow causing me to be hydrocephalic. If they had not found it I would have died. It was the scariest thing I have ever had to face.

I never really fully recovered. I have cognitive problems from brain injury as a result of the surgery. My ventricles are still enlarged. And it most likely triggered my dysautonomia.

Anyhow, if your CT is fine I'm sure you're Ok. They are good for at least a year. Maybe two. But like i said if your headaches continue request an MRI

[dream02]

the only link I'm aware of is a pituitary tumor

<{POST_SNAPBACK}>

I didn't realize there was a link with a pituitary tumor. I was diagnoisis in 2001 with a tiny pit tumor and was put on a med to contol/shrink it. Scans since then do not show it but perhaps that's what's causing my continuin POTS symptoms. Even with meds my BP is hovering around 89/60 today.

Denise

[violahen]

Hi:

I can't speak about the brain tumor question, but I can say that I DO get very severe headaches that often last several days with no relief.

Kristen

[Gena]

I get severe headaches in the back of my head too, since having POTS. Have never had these types of headaches prior to POTs. My MRI of neck and head were fine though.

[MightyMouse]

Again, there is no research supporting a link between brain tumors and POTS. Pineal tumors typically do not affect the ANS, rather, they mimic symptoms of chiari, where there are vision difficulties.

Gayle's situation, while it probably is related to her illness, is not typical of the majority of patients with ANS dysfunction.

Nina

[Guest GayleP]

Again, there is no research supporting a link between brain tumors and POTS. Pineal tumors typically do not affect the ANS, rather, they mimic symptoms of chiari, where there are vision difficulties.

Gayle's situation, while it probably is related to her illness, is not typical of the majority of patients with ANS dysfunction.

Nina

<{POST_SNAPBACK}>

I agree. That's why I said I'm pretty sure I'm the only one on this board and NDRF who has had a brain tumor. My case is not typical. And most people who have had brain tumors do not end up with dysautonomia.

[Guest GayleP]

Tasha,

I don't know if you have already posted this but what exactly are your dysautonomia symptoms? How do you know you have POTS?

[porque]

TO be honest I dont really think I have POTS, but I do have the symptoms sometimes...I dont have problems standing but I do get an increase in heart rate when standing (without my beta blockers of course) and I get fluxuatations in BP as well. Sometimes my BP goes high for no reason at all...I'm just weird...I dont really know what I have...maybe a chiari??? thats my theory of they day...I just think of one thing, get tested for it and then go on to my next cuz my test results are ALWAYS normal! So go figure! I stress out too much cuz I know I will just wake up one day and be fine again...but I will always be afraid that it will return again, which is why I really want to know what caused it and what is going on...so I can avoid whatever I did to bring this on...by the way I havent eaten a hamburger since I ate the one that I am 99.9% sure caused my symptoms. I was the "model" of health prior to this...people used to envy me cuz of it...m fiance used to tucker out at like 2am and I still wanted to party, he would be like" **** dont you ever get tired?" He would always get colds and get pissed cuz I never understood his misery of stuffy noses and coughing...people still envy my family cuz they are all so healthy...so I have no predispasistion over here at all...which is what makes me so frustrated...it seems like everyone that gets this is predisposed to it in some way shape or form...except me...Faint??? whats that??? I have never fainted EVER! I didnt even know what it felt liek to be sick...I never had headaches very often...only when I go to a high pollen area like Missiouri where my grandma lives, due I get a sinus headache...tired whats that? I've never been tired. Infection??? I only had 1 sinus infection and tonsilitis in the 10th grade...I actually know a few others (6) who have no predispasistion...and they eventually got "normal" again so I guess I should have hope...just getting tired of waiting and putting my life on hold over here...Ok I dont need to vent anymore...I dont want to start crying or anything now do I? Many prayers needed over here...I hope my prayers are heard. Ok shuting up now. I feel a good cry comming on.

[Guest GayleP]

I guess what I'm still not clear about is how this is all affecting your life? It sounds like you are fairly functional. At least more than the rest of us. Aside from BP and HR fluctuations, what else is the problem? Do you feel sick all the time? Are you symptomatic ie, lightheaded, fatigued?

[calypso]

Porque,

We should all be very happy for you that you are quite functional and aren't impaired by your symptoms. However, in my opinion, you are bordering on obsessive with this whole it's not POTS thing. If you don't t think you have it, why do you come here? What are you looking for from us? We are not going to be able to diagnose you or tell you if you don't have it. Have you actually been diagnosed with POTS?

We all come here because we have rough times, or if we are getting by OK, we provide help and support to others. Most of us would give anything to be able to exercise, breathe normally and not feel ill. I want you to feel your best, but I don't quite understand what's actually wrong with you. Occasional BP spikes are not POTS. Occasional heart rate increases are not POTS. Heart rate increases every time you stand really seem to be the primary sign of POTS. My heart rate goes up every single time I stand up by at least 30 beats a minute. That's how I know I have POTS, and that's how my doctor knows I have POTS. WHY each of us has POTS is a different story -- there are many, many causes and it's a very complex interaction of hormones, immune system, cardiovascular system, etc.

While all of us are trying to find a cause for our POTS, what we mostly do here is talk about managing our symptoms, because we all know that if you have normal cardiac/hormone/etc. tests, it's very difficult to find a cause. Please let us know if you have specific symptoms that are keeping you from leading a normal life and we will try to help. There's no point in mentioning repeatedly that you don't have a family history. I don't have one, and I for sure have POTS. Any illness can affect anyone. You don't always have to have risk factors. I had preeclampsia and the only risk factor I had was that it was my first pregnancy. I did not have a sister or mom with the disease, was not over 35, wasn't overweight, didn't have an autoimmune disease, etc.

Amy

[porque]

Actually Any,

I do have the heart rate increase every time I stand up...I guess it just deosent bother me too much. My heart rate can be really high and I dont seem to notice it too much, unless I am trying to play sports of something like that. I do take a beta blocker and that lowers my standing heart rate from like 110 to 80. I have been DX...well...kinda...my doctors exact words were..."I think a mild case of POTS is messing with your system, but its very mild and I very sure you will heal in about a year." He is Mayo Clinic trained...tried to get me in there cuz I insisted but Dr. Low didnt think my case was severe enough and said I would most likely get better in a year or two and I should just live my life. So nobody even wants to see me. Just cuz my symptoms arent severe dosent mean they dont bother me and interfere greatly with my life. I just want to know whats going wrong so I dont keep thinking "Do I have a brain tumor?" and thoughts like that. Anywho, I know you dont have a family history over here,I was just saying that most do. You dont have to have a family history either per se, you might have abirth defect causing this stuff...you seem to have alot of muscle waisting...thats odd and scary I bet Have you look into mitochondarial issues? Thats the next avenue I would search into if I were you. I think I was reading a post a few weeks back about exercise intolerance you said you have it as a child right?? I'll quote ya.

"I don't know why your doc would ask this, but I definitely had crappy exercise tolerance growing up. I often would not be able to finish the 600-yard run we were required to do when I was in fifth grade. 600 yards isn't even that far. I never gave much thought to it, but I guess I have lately because of my health problems. I am guessing maybe it gives the doctor insight into possible cardiovascular issues.Amy "

So you did have something not quite right back then...not in the shape of POTS but something was fishy? Humm dosent it make you wonder. I'm gonna build a big MRI type machine that can scan a body and pinpoint what is wrong and where. Well if I want to do that one I better get started on my engineering degree...lol

[calypso]

Wow, you certainly have a good memory. No brain fog for you, I guess.

I have accepted that sometimes, we just don't know what is wrong. Because it's exhausting me to keep trying to figure it out. I am normal on nearly every test. Just because I didn't exercise well as a child doesn't mean it is linked to POTS. I was not the only one who was a crappy runner/athlete. In fact, one of the girls from my high school who was never into sports or athletics became a bodybuilder recently. I also was exercising regularly and doing very well with it pre-POTS.

I just think you ought to relax a little about your health. I am not saying let go and don't ever try to find a cause, but just because you have this dysfunction doesn't mean you have a brain tumor. Your worrying is surely causing you stress, and stress is definitely not good for the body.

A friend of my sister's developed chronic fatigue syndrome about 15 years ago. She was 16 at the time. She was sick for eight years, and at one point was in a wheelchair. She got better by going to physical therapy twice a week for five years. She had many of my symptoms, too. I try to remember that when I think of how many odd things are going on in my body, and I tell myself eventually I will heal, because she did. I just have to be good about reconditioning myself and taking care of myself.

Maybe this also will be the case for you. Sometimes, your body just needs time.

Amy

[Guest GayleP]

I don't have a family history of dysautonomia either. I am the only person in my family with this.

The doctors can only guess if you are going to improve or not. They simply can't predict our futures for the most part. I hate to have to keep telling you this but unfortunately that's the way it is. This is such a complicated disorder and still not really understood so with most of us there is no for sure answer as to what our future looks like. Which ***** but there is not much we can do about it.

As for having a brain tumor I doubt you have one. They are rare for one. And you had a CT which was negative. If you continue to get really bad headaches then request an MRI which will rule out a tumor.

The worrying will only make you sicker. If you are able to walk and inline skate then try to focus on that. Find a nice place to do either. The exercise will prevent you from getting deconditioned and besides it's fun