Nin

On 4/2/2016 at 11:20 PM, Guest said:

Thanks for the replies!

I've had all of my levels tested.  I'm not anemic.  I do run a bit on the hypothyroid side, but I'm on medication that is keeping it level.  

Weird about the Pine Nuts.  I definitely haven't eaten any of them though .  

Hmmm, the cerebral spinal fluid leak sounds like a possibility.  The metallic taste started shortly after a plane ride (my POTS type symptoms were really bad when we were at peak altitude, for whatever reason).  I've also started to get a weird pressure in my ear (no pain), and then a tiny bit of clear fluid comes out (which relieves the pressure).  

I've just noticed that although the metallic taste happens often on its own, it also always happens before and during this ear pressure/fluid.  And you know what?  It does kind of feel like a tiny bit of something going down my throat (and maybe the ear fluid is a bit of overflow that happens every now and then).  Sometimes it makes me feel really nauseated. 

I mentioned it to my doctor at my last visit.  She wasn't concerned.  I'll bring it up again though, because something isn't right.  

Thanks!

I've had this metallic taste on and off for yrs. Haven't long been diagnosed with pots so don't know if it's related. Another thing you said about fluid coming out of your ear. I also had fluid coming out of my ear and turned out I had something called cholesteatoma in both ears, it would be highly unlikely you have this. But I would strongly suggest you get your ear checked as fluid shouldn't be coming out. Another thing is CSF leak, again highly unlikely. I've just had a brain MRI and I worry about a cranial CSF leak as the problem with my ears caused my brain to herniate into my one ear as the cholesteatoma grew into the temporal bone. But thinking now maybe this metallic taste has just be a symptom of pots all along and may have had pots for years without knowing.

Please do insist to your doctor you want this checked and have them refer you to ent. If you feel something is not right make sure they listen to you

2 minutes ago, Pistol said:

@Nin - as you know I also take seizures caused by POTS and also have high BP from HPOTS. I have been on several BB's and they all were safe for me to take. I had no bad side effects, just some only worked for a while and then I had to switch. Now I am on Carvelidol with good effects for many years. Try  the Bisoprolol- we all are different in the way we tolerate meds. In my case they all worked on lowering my HR but not the high BP. 

Well that's reassuring as my symptoms sound really close to yours as like I said not many people seem to have siezures as well. All I can do is try and hope for the best! Hopefully sort the medication out soon. 

The consultant I seen originally was going to put me on ivabradine but has now said bisoprolol. My resting heart rate is around 60 so I don't know if that's why he changed his mind as originally he said he don't want to put me on beta blockers. I've never taken medication for pots. My main hurdle is I get siezures and feel it's going to be hard to find the right medication. When my siezures were reported my heart rate was going up to 180 so maybe beta blockers will stop it getting that high in the first place. I'm worried about the side effects. 

12 hours ago, Pistol said:

@Nin - to clarify my message: my autonomic specialist understands these seizures and sees them at times in his autonomic clinic. But even after HE diagnosed me with HPOTS as the reason for these seizures - other physicians such as cardiologists or ER doctors have never heard of them. If you find a knowledgeable specialist ( I am not sure what country you reside in but there are a few good ones internationally ) he/she would be familiar with these and should be able to have treatment suggestions. Having said that - treatment for HPOTS is usually hit-and-miss, more of a " try and rule out " concept that can take a long time. As to the Ivabradine - try it and see. I had to kiss a lot of frogs before we found the right meds. 

Ah right yes cardiologist etc are usually the ones who don't know a lot. I seen a specialist in pots and he didn't explain anything to me or give any advice. Everything I have learnt has been off here. 

1 hour ago, Pistol said:

@Nin - I too have seizures from HPOTS, this was even caught on long-term EEG at an epilepsy monitoring unit by a neurologist. HR and BP go up ( due to sympathetic overcompensation causing sudden and severe vasodilation ) and in about 2-3 seconds I have what looks like a grand mal seizure. this is due to complete loss of circulation to the brain. I used to get them really often but since proper treatment, especially frequent scheduled Saline infusions, I barely get them any longer. Some docs call them convulsive syncope, others call it anoxic seizures or autonomic reflex seizures. For a while I took seizure meds, before they diagnosed them as autonomic seizures, but - of course - they did nothing. And yes - the vast majority of physicians do not know about them. Even after diagnosis by the most renowned dysautonomia specialist in the US docs look at me as if I am a space monkey - they have never heard of such a thing. And when they witness them they just shake their heads in utter disbelief. --- I am sorry you also are experiencing them but I found great relief once I met others that have them. It made me feel less of a freak!!!! I hope your doctors will educate themselves and find the right treatment for you 😉

See this is the worrying thing like you said even renowned specialist don't understand this and then I'm worried I won't get the right treatment to sort this. I can't see how ivabradine alone will work...but I might be wrong.

8 hours ago, KaciCrochets said:

I don't have answers, but the same thing happens to me. My bp at home is around 125/78 but at the clinic it's 155/98. The nurses always seem concerned but the doctor never mentions it. I specifically emailed my clinic about it and the nurse forwarded the message off to my doctor but I haven't heard anything since. I"m definitely adrenaline sensitive but I don't know if that's causing the spikes or what. Seizures are outside the realm of my experience but I would hope you would be referred to a good neurologist after what happened during your TTT.

3 hours ago, Sushi said:

It is called “white coat syndrome!” Most doctors take it into account but if yours doesn’t, take your home BP machine with you to appointments and ask your doctor to scroll through the memory. My BP is always higher at a doctor’s office than at home too.

Having seizures during your tilt table test must’ve been really distressing! But again, even though you didn’t feel nervous, some part of your brain knew that you were being observed and tested, plus being dehydrated. All that is enough to make you more symptomatic. Plus during the tilt table test you have to stand without moving at all so you would never replicate standing for 40 minutes without moving in your normal environment. My tilt table test results were exceptionally screwy during the “long stand” part of the test.

Yes it must be white coat syndrome! I'm taking my own readings for 3 mornings to email over so he can see, as the medication ivabradine might not be suitable.

It was distressing as it happened 3 times and I thought please just put me back down now. Yes true I suppose being dehydrated made me worse as by that time on a normal day I would have had 2 coffee's and 2 pints of water by then. I really hope ivabradine works and I can start walking again.

8 hours ago, KaciCrochets said:

Seizures are outside the realm of my experience but I would hope you would be referred to a good neurologist after what happened during your TTT.

I've seen a neurologist before the ttt and she knew then I was having siezures and not once said it could be pots related. I think siezures are more of a uncommon symptom of pots and most neurologist and cardiologist are not aware of this. 

My blood pressure when I test at home is on the low side and then with doctors it's higher. They're not seeing the true me. I don't know if it's a adrenaline problem with me but my HR goes through the roof and blood pressure goes from 105/58 at home to 130/78 with doc. Doc said about putting me on ivabradine but I'm worried it's going to drop my blood pressure. 

I had a tilt table test today and my heart went sky high and had 3 siezures through the test which was like 40 mins standing. My heart again at home don't usually go this high, so I don't know why my body reacted like this as before I went in I wasn't really that nervous. I hadn't had my daily fix of coffee (which seems to help) less water and walked to appointment which done me in beforehand. Do don't know if this triggered something inside. I have siezures at home but when I do too much on my feet, I had a siezure really quick with the ttt...so wondering if its a adrenaline thing like a fight or flight reaction my body felt having this test??

All this is true! I was saying the exact same things to my mum today 😂

It's just not a shock to the system to me as this is how I've been living anyway. I'm just watching people around me falling apart already. 

One good thing for me is I got my children home with me and don't have to be crying every morning because I can't take them to school anymore.

22 hours ago, Nin said:

 

Thanks pistol. I've learnt a lot from the info you sent

What's excessively vasoconstriction? Do a bath trigger that? Baths make me feel terrible afterwards. I had a siezure the other day after a bath because I kept going and my body was telling I need to lay down. Haven't had a siezure for about 3 months.

No I haven't tried that. I'm not even sure what vasoconstriction or vasodilation is to be honest? Which one of those effect in a hot bath do you know? A bath make me feel terrible after. I even had a siezure after a bath the other day because I felt exhausted after it and pushed myself to keep going.

I find after I drink a cup of coffee in the morning I feel better. I know I wouldn't if I kept drinking throughout the day, I have another one around 3pm and again feel better. I thought coffee would make you feel worse. I'm thinking maybe my problems are more brain related like a leak as caffeine helps, i have had brain trauma off the back of problems with both ears. Hopefully having MRI Saturday but if they don't put dye through I don't think they would see a leak.

On 3/15/2020 at 12:54 AM, Derek1987 said:

The only time this happened to me was recovering from a full faint at olive garden. This was before i knew i had this condition and my first faint issue. When i gained my hearing and vision back, i couldnt move or speak for a few minutes. When the paramedics arrived they were asking me questions for insurance purposes. Some time had passed and i could barely get words out. It was like trying to pick up a really really heavy weight in the strength it required to speak. They wouldnt even let my wife answer for some reason. 

 

Even when i was in the ambulance it was hard to speak but he did say my blood pressure was coming back up. By the time i arrived at the hospital and was in a room, i was back to normal. Just seriously freaked out. 

 

I wonder if it's a blood pressure thing. 

17 hours ago, yogini said:

This happens to me often though not sure it lasts for a minute.  Maybe 30 seconds or so.

Yeah last about 30 secs for me. 

Yes thats what I was thinking. It must be the lack of blood going to brain. 

I decided to walk to my appointment as I don't like going in a wheelchair. After about 4 minutes of walking I tried to talk to my mum, i would say a couple of words and then nothing would come out, I would try again and no words. We just sat in silence for about a minute until I could speak again. Also as I sat I could see stars flashing.

I also twitch and the more active I am the more I twitch, have had this for a year

I feel like I'm on a boat constantly. My head feels like it going back and forth. I always say I feel like the dog with the bobbing head off the Churchill insurance advert (I'm in the UK). It's worse when eating, my head feels really heavy and feel like I'm going to fall forward. I've had major problems with my ears which went to the brain and I always thought it was my ears/brain trauma causing this, but now I'm thinking it could all be pots related. I can't believe the symptoms you can get from pots and times I have thought ms or Parkinson's disease. Brain scan shows no sign or either, it just shows brain Dura herniation, temporal lobe slightly displaced, but neurologist said this wouldn't cause my symptoms. 

Thanks pistol...you have a lot of knowledge about dysautonomia!

I get palpitations quite a lot, after eating sometimes, sitting and when I lie down to go asleep. I feel really off Balance with it as well. But when I check my heart rate it's my normal resting heart rate when sat, but it's feels like it's going so fast I expect my heart rate to be high. My symptoms just seem to wax and wane. One minute I think I'm getting better and then I get a day from h***!

23 hours ago, Random-Symptom Man said:

@Nin - walking is no fun for me - especially chairs. I used to go for walks all the time. Anything upright that is strenuous tends to set me off. I can exercise laying down without much problem. I do Yin yoga because I can sit or lie down the whole time. 

Some days I can walk without any issue. Other days I want to pass out or puke. I tend to do better when I am cool. Heat and walking don’t mix for me. 

Funny you say that someday you can walk without any issues as today I felt like that and thought why is that. What have I done differently

Thanks for all your replys!

Is walking usually a big problem for people with pots? The stairs are the worse for me, my heart pounds so fast and I feel like I'm going to drop. This is the hardest thing for me not being able to walk far as I can longer take my children to school as I don't think I will make it to their class. If I push myself I will have a siezure or my legs will just go so weak that I will drop to my knees. 

My symptoms are triggered from walking (just around my house)  I don't go walking outside as I just can't. So how will a tilt table test pick up if I have pots? I know they're looking for your heart rate to rise to 30 and above, but mine is when I start walking not standing on the spot. What I don't understand is when people get up they don't just stand on the spot, they get up and walk. I suppose I'm worried that I will get a false negative when I do get a tilt table test. Also my Resting heart rate is about 57 so it's on the lower side.

Yes that's makes sense now