Another ambulance ride. New/worsening symptoms

[Derek1987]

So I was laying in the bathtub for about 20 or so mins. I felt decent other than a headache. I get up to wash and I couldn't. My balance and coordination was way off. I crawled to my night stand in panic and took a medicine that starts with a M. Supposed to help with that and bring blood pressure up. I felt like the room was spinning. I've had these feelings before but not this severe. 

 

I didn't want to go to the hospital but the spinning feeling wouldn't go away. I put on a shirt and pajamas. My wife arrived home and I told her what's going on. She was urging me to go. The spinning wouldn't stop. I thought I was going to pass out. It is by far the scariest symptom of this disease to me. I eventually gave in and I got taken to the hospital.

My blood pressure was high but everything else checked out which I knew would be the case. Especially since I took that one particular medicine. The NP actually knew about the disease. The spinning went away but my balance was off. I had to lean against the wall to give a urine sample. There was really nothing they could do for me. So I guess a question is, when is it time to call an ambulance?

The new symptom I felt was when I was at the hospital. The whole duration I was there, my scalp was tingling as if the skin had fallen asleep. It even went down the left side of my face for a few minutes then went away and remained tingling on my scalp. I got home and was determined to shower. I almost fell but I made it.

Now I'm in bed fatigued and discouraged. 

[MomtoGiuliana]

So sorry you had such severe and scary symptoms.

The warm bath water may have contributed to blood pooling.

I have had such symptoms and also gone to the ER--when I didn't have a diagnosis, and also a few times after my diagnosis (over the years).  When symptoms are severe or something new comes up that is scary, I think it is a normal reaction to consider going to the ER.

We can't advise you on the forum about when to go to the ER, except to share our experiences. I would say that if possible you should try to reach your doctor to get a verdict as to when to go to the ER.   Although typically for liability reasons they will likely advise that you do so, if you are having symptoms that mimic heart attack, stroke, etc.  I know once or twice when I had very severe symptoms my husband called 911 and paramedics checked my vital signs at home.  Although I felt dizzy, weak and unstable my oxygen, pulse (lying down) and bp were OK, so I opted to stay home.  

The tingling you describe I have had as well with events like this.  This could be caused by hyperventilation.  Did you mention this symptom while at the hospital?  It may be helpful to maintain a diary of symptoms.

Hope you can rest well tonight.

 

[Guest KiminOrlando]

I got a good BP cuff and an O2 monitor so I could check the big stuff. They also make those EKG things you put your fingertips on and can email your doctor. If all those things come back normal, I don't usually go, but that is just me and my illness and what my doctors and I decided. There are plenty of times I go for other stuff. It might be worth talking to your doctor about acquiring some of those tools and setting guidelines so you don't feel so uncertain. 

[Pistol]

@Derek1987 - I live 1 hour away from the nearest hospital and used to have to frequent the ER often. I always had my husband drive me but once or twice I called my PCP and he at that time advised me to call the ambulance ( which I did not ). I personally think that if your symptoms are such that there is concern for a true emergency I would definitely call 911. Also if you are not able to handle a drive to the ER or if you feel you need immediate help. What @MomtoGiuliana said is also a benefit from calling 911 - they can check you at home and you may find that you do not need to go. But ALWAYS: if in doubt - call 911!!!

The medicine you took to bring up your BP - was it Midodrine? That will cause scalp tingling - it is a "normal" and harmless side effect. 

[Derek1987]

4 hours ago, Pistol said:

@Derek1987 - I live 1 hour away from the nearest hospital and used to have to frequent the ER often. I always had my husband drive me but once or twice I called my PCP and he at that time advised me to call the ambulance ( which I did not ). I personally think that if your symptoms are such that there is concern for a true emergency I would definitely call 911. Also if you are not able to handle a drive to the ER or if you feel you need immediate help. What @MomtoGiuliana said is also a benefit from calling 911 - they can check you at home and you may find that you do not need to go. But ALWAYS: if in doubt - call 911!!!

The medicine you took to bring up your BP - was it Midodrine? That will cause scalp tingling - it is a "normal" and harmless side effect. 

Yes that is the medicine. I asked the nurse practitioner about it and asked if it was a side effect. She said no. This is why I don't fully trust people in the medical field. I brought my test results to show a cardiologist and I got a nurse practitioner. At least she knew about the disease a bit. She was saying I just have to find out what my triggers are. She gave an example of spicy food. Someone she knows has our condition and ate spicy food and set them off. This too happened to me months ago when I ate some peppers. But I was so dizzy and uncoordinated yesterday, I looked like a drunk person I'm sure. 

 

The discouraging part about this is, I usually bathe this way. Lay down in the tub with 2 or 3 inches of water. I can't handle anymore warm water or I feel Ill. I lay there and relax. Then I get up and shower. I guess I can't do that anymore. The discouraging part about that is my condition must be getting worse. I guess....or maybe it was just a bad day. Thanks for the replies guys.

[Pistol]

@Derek1987 - I also have trouble tolerating a shower and frequently opt for a bath instead. Here is the problem: hot - or even warm - water will cause your blood vessels to relax and therefore your BP will drop. So - if you get up it can trigger your POTS symptoms. Here is what I have found helpful:  it's OK to bathe but once you are done soaking - sit up for a while. Then start the shower and sit until you feel OK to stand, get up slowly. The best thing is actually a shower chair you can get into after the bath to rinse off. You can get these easily at a medical supply store or even online ( they are not all that pricey ). ygucvy ( sorry -  my cat just walked on the key board ). So - it is best to slowly adjust to getting out of the tub - or you will have symptoms.  

[gertie]

How did you get the spinning to stop?  I have POTS & Meniere's disease.  What you experienced sounds like Meniere's to me. I sometimes think it is more frightening than Dysautonomia.   Did you get nauseous with your vertigo?   Maybe I'm not allowed to say this, but either Ativan or Valium  sometimes helps with vertigo.   

[Derek1987]

9 hours ago, gertie said:

How did you get the spinning to stop?  I have POTS & Meniere's disease.  What you experienced sounds like Meniere's to me. I sometimes think it is more frightening than Dysautonomia.   Did you get nauseous with your vertigo?   Maybe I'm not allowed to say this, but either Ativan or Valium  sometimes helps with vertigo.   

It stopped on it's own but I still didn't have proper balance.  The spinning seemed worse when I closed my eyes. I get nausea for no reason all the time. Not necessarily set off by anything but sometimes is.  I took 2mg of Xanax which is what my doc said I could take during severe panic. It barely phased me. Too much adrenaline I guess. My hands were sweating and shaking. Could have been caused by the panic. My hands always shake to some degree though.

 

@Pistol or anyone who can answer. Is dizziness and loss of balance a sign of fainting to possibly come or is it it's own symptom of this disease altogether?

[Guest KiminOrlando]

Is your doctor calling this a Panic attack or was it just an arbitrary term you used? I see the Xanax referenced. What caused them to prescribe that? 

I get spinning too. I don't have panic attacks. Mine is dysautonomia and craniocervical instability which puts pressure on my brainstem. There are days I have trouble walking. I basically bounce from wall to wall, stumbling, like I am in a carnival funhouse.  Nothing makes it stop. I just wait it out.

[Derek1987]

26 minutes ago, KiminOrlando said:

Is your doctor calling this a Panic attack or was it just an arbitrary term you used? I see the Xanax referenced. What caused them to prescribe that? 

I get spinning too. I don't have panic attacks. Mine is dysautonomia and craniocervical instability which puts pressure on my brainstem. There are days I have trouble walking. I basically bounce from wall to wall, stumbling, like I am in a carnival funhouse.  Nothing makes it stop. I just wait it out.

The condition is causing panic attacks. My body is in fight or flight a zillion times a day. And when something like this happens to me, the panic goes into overdrive. But yes panic attacks is officially written in my psychiatrist Dr records. I've had anxiety my whole life. When the faint spells started happening, my anxiety amplified. From the fear of fainting and I guess the high amounts of adrenaline. I did an autonomic nervous system test that apparently shows my adrenaline is way above normal. A normal person was rated a 1. Mine was at an 11. I'm sure it goes higher than that when I'm really feeling fight or flight. 

[Pistol]

9 hours ago, Derek1987 said:

or anyone who can answer. Is dizziness and loss of balance a sign of fainting to possibly come or is it it's own symptom of this disease altogether?

Hi Derek - I used to get dizziness sporadically as well as loos of balance at times, to the point that I would run into things. If it is longer lasting I do not believe it is due to pre-syncope. Yes - dizziness is a main symptom of POTS - not sure if loss of balance is. 

 

5 hours ago, Derek1987 said:

The condition is causing panic attacks. My body is in fight or flight a zillion times a day.

I have hyperadrenergic POTS and when I get like this I start tremors, cold sweats, yawning and eventually pass out or take a seizure. It can ABSOLUTELY cause a panic attack during this!!!! It is scary - even for someone who is used to it like me. And I also get anxiety when my BP goes up ( not the other way around ) because I am so scared of passing out, the anxiety causes more adrenaline and the BP goes up, symptoms gets worse … a vicious cycle!!! Thankfully I have not had a seizure in 7 months, since starting weekly IV fluids. I have passed out 3 times since then but only when ill and POTS was worse due to illness.  But I remember it and I am sorry that you are having to go through all of this. Thankfully you have a good psychiatrist at your side!!! And keep in mind - it took 9 years but today I am much better , still very limited but no longer having these frequent storms and episodes. I wish the same for you!!!!

[toomanyproblems]

Well, I just want to throw this in because along with all the weird symptoms we have these things can get missed. I had some pretty severe symptoms this week and since I'm such a mess normally I just hung tight onto the sides of the bed and tried to survive my way through it. I figured it was more of the same just worse. Turns out there's a bad bug going around and if it hadn't been for a neighbor calling and telling me he had been sick and describing the symptoms and progression exactly as I had had it, I would've never guessed I actually had an infectious disease. It wasn't the flu but some other bad virus. He went to the Dr three times and missed eight days of work with high fever, aching, coughing, headache, and later vertigo. At the time I talked to him I picked up on the other stuff that I had already experienced and was experiencing but sort of forgot the vertigo part until yesterday (I think -- it's all glomming together :/) I woke up really dizzy. Again, not unusual for me so I didn't think anything about it. Then I started realizing that things were spinning. Still not that unusual for me. I just stopped trying too walk around. Then it progressed to me feeling like I was going to fall off the bed while lying flat on my back my head was spinning so bad. It wasn't until that point that I finally remembered my neighbor having vertigo as one of the later symptoms of his (and apparently my) bug. 

So the moral of this story is maybe you didn't have this bug with high temps and flu like symptoms like I just had but there are viruses that can cause middle ear problems like vertigo alone and this is also bad allergy season that can cause it too. I've had vertigo in isolation way before I had all this other mess and it can make one feel pretty horrible and desperate just by itself. Add in POTS/dysautonomia problems and things can get hard to untangle. Sometimes we forget the other things that can slip in and mess us up along with the usual. 

I will say that once I got my first vertigo causing middle ear problems in my mid thirties, I've been susceptible to them ever since. Sometimes it goes away in a day, sometimes days.  I never know until it's gone. It's funny because I don't get colds hardly ever but I get this instead. Or I'll start getting as cold and then it goes into my ear.

Just thought I'd mention this because even though it feels absolutely scary horrible, especially the first time, and can be dangerous because of falls, it can be a fairly innocuous, passing thing, relatively speaking. I'm not saying this is true of your experience. Just that it's possible.    

[bombsh3ll]

I'm so sorry you're going through this Derek. 

If it is any consolation I haven't had a shower in nearly 5 years either, except in hospital where they had a seat. I only have baths so I can be sitting/lying, and go straight to sit on the toilet with the window open afterwards. 

It is rotten how we can feel so faint and lightheaded and yet the BP is high. Midodrine is a vasoconstrictor and didn't help me either. As Pistol mentioned, the pins & needles/stroke like sensations are absolutely a side effect of it - I referred to it as a "stroke in a box". 

Perhaps it isn't the best med for you either - at the least I would suggest checking your BP first if you are considering taking it again, because in the beginning I would assume mine was low as I felt so faint, yet it was actually high. 

And yes Diazepam (another benzodiazepine) helps me too. I do not have any psychological disorder other than the natural sadness and worry that this condition brings, but it does help calm an overactive sympathetic response. 

B xxx