Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Non Mast Cell Disorders, such as Ehlers-Danlos, POTS, MCS-CF, etc. >> Non Mast Cell Disorders, such as Ehlers-Danlos, POTS, MCS-CF, etc. >> Symptoms of POTS http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1426209541 Message started by Britt on 03/12/15 at 14:19:01

Title: Symptoms of POTS
Post by Britt on 03/12/15 at 14:19:01

Could someone explain the symptoms of POTS to me? What does it feel like?

Title: Re: Symptoms of POTS
Post by MGC on 03/15/15 at 16:03:27

Hey Britt. There is more than one type of POTS, so symptoms and what it feels like can vary. I will leave a couple of links so you can do some reading. Here is Diagnostic Criteria for POTS: " The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension.1,2,3,4 In children and adolescents, a revised standard of a 40 bpm or more increase has recently been adopted.4,5"

http://www.dysautonomiainternational.org/page.php?ID=30

There are symptoms at that link as well.

More on symptoms:

http://www.dinet.org/index.php/information-resources/pots-place/pots-symptoms

Hope this helps.

Title: Re: Symptoms of POTS
Post by PJP123 on 03/19/15 at 16:36:39

Hi Britt,

I have Dysautonomia and went for testing saying I thought I had POTS. After tilt table test the electrophysiologist said I had neurocardiogenic syncope. I've never passed out in my life. I have chronic fatigue since I'm 15.

It feels like tunnelvision, like a horse with blinders on....only seeing what's in front of me. I feel detached from my body. I have tachycardia and always have to be sitting with my feet up. Can't work, grocery shop, do anything normal. I hate it.

Title: Re: Symptoms of POTS
Post by Britt on 03/21/15 at 07:48:16

I hate to self diagnose, and know that when we try and do that, we are usually wrong, but I'm starting to think that I may have POTS. But I feel exactly like you do and I am having a hard time living my life right now. I just want to feel normal again. Im having vertigo, more like an off balance feeling/equalibrium is off. The only relief I get from this is when I lay down. I am also having EXTREME anxiety and I don't know if the unnerving feeling of the vertigo is causing the anxiety, or vice versa or if they are two different things that started at the exact same time (which is the weird part) But I'm really struggling and don't know what to do.

If it is POTS, is there a way to get this balance/equalibrium problem under some control? I sure hope so. I can't stand it anymore. I can't do anything.

pjp123- I am so sorry :( I know how you feel. how long have you had this dysautonomia? Do you have good days bad days, or is it constant? Does it go in and out of remission? Do any medications or dietary changes help you at all? Do you ever get any relief?

I am requesting that my general practitioner refer me to be tested for this.
Is there any hope to live a normal life with POTS?

Title: Re: Symptoms of POTS
Post by MGC on 03/21/15 at 19:55:02

Hi again. Anyone with Vertigo and other POTS may want to seriously consider being tested for Hyperadrenergic POTS. Here is why....

"Norepinephrine is involved centrally in modulating the intensity of reactions to vestibular stimulation (Wood, 1979) and also affects adaptation. Both alpha (1 and 2) and beta receptors are found in the vestibular nucleus. "

http://www.dizziness-and-balance.com/treatment/drug/drugrx.html

Yes, sometimes self-diagnosing can be a real problem, but if I had not done this over the years, I am afraid I would still be labeled as A Hysterical Female who needs a hobby...or a Therapist...or something other than medical care.

I am going to try to attach a chart with the different types of POTS. Hope it works. Good luck!

Title: Re: Symptoms of POTS
Post by MGC on 03/21/15 at 20:01:10

Didn't work but it is at this link about half down the page...

http://www.bjmp.org/content/postural-orthostatic-tachycardia-syndrome-pots-evaluation-and-management

Title: Re: Symptoms of POTS
Post by Britt on 03/22/15 at 05:38:39

Thanks mgc,
Have you found a regiment to help control the symtoms?

I can tell that a lot of my probelms are coming from my left ear. My hearing and balance test showed a 36% vestibuar weakness is my left ear. I have a crackling popping sound it that ear when I move my jaw, and it tends to plug up when I breath through my nose. Could this be part of POTS, or does it sound like something different? My head always feels "buzzy" even when I'm sleeping, though the off balance/vertigo whatever you want to call it, does get better when laying down. I also have EXTREME anxiety. I'm not sure if it's caused by the vertigo, or if it is a separate situation. I'm so confused and so scared. I just want some answers and some help. I can't keep going like this. I need some relief. It's a living hell :'(. Can things get better? Or am I stuck like this? Ugh.

Title: Re: Symptoms of POTS
Post by MGC on 03/22/15 at 06:45:04

Britt, I take Clonidine which tricks the body into producing less Norepinphrine. That helps reduce many symptoms. Vanderbilt only recommends two meds for H. POTS...Clonidine or Methyldopa. I have tried Methyldopa at one point but was unable to take that. But yes, things can get better.

If you have Hyperadrenergic POTS with high levels of Norepinephrine, that could cause both Vertigo and Anxiety, and so it may not be that one of those is causing the other. If you are adequately evaluated for H POTS, the testing could rule out a Pheo (a tumor which secretes Norepinephrine) at the same time.

Hang in there!

Title: Re: Symptoms of POTS
Post by Britt on 03/22/15 at 09:41:15

The vertigo is so bad I can't even function. It's making me feel detached from everything. such a creepy feeling. I can't stand it. I just want to feel like myself again. I think the vertigo is causing the relentless anxiety. The anxiety feels like a constant surge of adrenaline/electricity going through my body. I'm stuck in the "flight" mode 24/7. Does this sound like POTS?

I just wish I could figure out how to be tested for POTS. I have an email into my general practitioner. Hope she'll work with me on this and take me seriously.

IF it is POTS, would it make sense that I have a "weakness" in my left ear? I also have earaches often, in both ears, but more in my left ear. Can this be part of POTS or does it sound like something else. I'm kind of questioning the results of the hearing and balance test. I just don't know anymore.

Is there any hope for me to come out of this?

Title: Re: Symptoms of POTS
Post by MGC on 03/22/15 at 10:26:29

This sounds like Hyperadrenergic POTS...

"The anxiety feels like a constant surge of adrenaline/electricity going through my body. I'm stuck in the "flight" mode 24/7. Does this sound like POTS?"

You can check your pulse at home yourself. It is very easy. If it increase more than 30 beats per minute when you stand, then that is an indication of POTS.

I have a problem with my left ear, but all indications are that it is a part of the Connective Tissue problem I have. TMJ is common with Connective Tissue problems.

Where do you live? There may be someone around that can do testing.

Title: Re: Symptoms of POTS
Post by Britt on 03/22/15 at 10:36:14

Hi mgc- thanks for responding. Sounds like I really need to look into this.

If it is POTS, is it possible for this feeling to go away or am I stuck like this forever? Is the kind of POTS you mentioned a more severe case of the disorder? I've had these symptoms for 3 months straight. I'm so scared :-[. Can medications help to treat this to live a somewhat normal life?

Title: Re: Symptoms of POTS
Post by MGC on 03/22/15 at 11:20:39

Britt, if you read an earlier post, you will see that meds do help, or have helped me anyway.

It is not necessarily a more severe form, but since it is genetic, you are not likely to get rid of it.

Here is a link of Drs by state. Maybe you can find someone on it. http://www.dinet.org/index.php/physician-list?view=physicians

I don't know about your financial situation, but I have found the Omron 7 series wrist BP cuff to be very helpful to me. If I am not feeling well, I put this on and track my BP and pulse for awhile. It is worn on the wrist and will store readings so that you can share them with your Dr. You can find them in stores such as WalMart. Many of the wrist BP cuffs are not any good, but this one has been clinically validated.

Hope this helps.

Title: Re: Symptoms of POTS
Post by Britt on 03/23/15 at 03:19:59

Thanks mgc,
I had read the earleir posts, just looking for some reassurance I guess. I just want this constant vertigo/detached feeling and flight mode to let up some. It's been constant for over 3 months and is wearing me down :(

Title: Re: Symptoms of POTS
Post by PJP123 on 03/23/15 at 04:28:14

I didn't read everyone's comments but I am answering your add'l questions.

I have vertigo/spinning episodes. They last for about a week and then go away. There are exercises you can do at home that I saw on you tube that helps with the vertigo. I have tinnitus that is roaring.

There is nothing that helps POTS really. I take blood pressure meds and vyvanse for the speed affect. I'm at 10% normal human with speed. I've had this since I'm 15. It's not new, just finally diagnosed at 3 years ago on the advise of someone from this forum. I thought it was POTS (still do), but Dr. doing testing said Neurocardiogenic Syncope). My blood pressure shoots up 30 and then starts plummeting when standing up.

I don't work (couldn't if my life depended on it), even when I was younger I was the worst employee of all time. Never did my work, so tired couldn't keep my head up. It is the worst feeling in the world, I am sooo sick of living like this and think about throwing in the towel everyday. I hang on because of my beloved children. I can't do anything with them. All I do is sit on the couch with a laptop.

I went to a mast cell specialist (worked at Brigham and Women's) and she hasn't really come up with what's my problem. I was given every med for mast cell and still feel awful.

I feel it's vascular or blood related.

I know for a fact I felt better after antibiotics.

I'm seeing a gastrointerologist in Manhattan July 7 who deals with inborn errors of metabolism and gut microbes. But have to wait til July!!!!!

I have 2 or 3 good days a month. Can't find the rhyme or reason to it.

I do know I am extremely sensitive to meds/vitamins.

My older brother just started with symptoms of all this mast cell crap and went to emergency room 2x and was told it was nothing. I said to him "Welcome to my world".

I printed out forms to fill for a study they are doing at Vanderbilt University for POTS. If they accept you it's 3 days of testing!! YEAH!!! They get it there, but I live in NY so it's no cheap trip.

I am not going to eat gluten. Just to see if this helps.

Did you do 23andMe genetic testing? I would love to compare our genes, cause I always felt we where very similar in our symptoms.

Another thought I had too was with the Trich. maybe we have a constant infection in our bloodstream? How do you prove it?

Title: Re: Symptoms of POTS
Post by PJP123 on 03/23/15 at 04:33:43

Also Britt,

Xanax helps. It calms you down. The other meds you take may be creating a serotonin syndrome type effect. That happens to me when I take vitamins and then eat say beans. I definitely have a nuclear internal reaction. Not stomache, but nervous system. I'm strung out, wired, feel like in a panic. All from eating something.

Saturday I ate an egg, bacon and cheese on a roll (I know, why the heck did I eat such a thing). Then I ate about 8 Hershey little chocolates. Later in the day my right knuckles where bright yellow (almost went to the hospital with proof of something's not right) and then that night I awoke to hiccups. When my dad had a stroke and we went to emergency room he was hiccuping and the doc said this is from stroke or central nervous system problems.

Title: Re: Symptoms of POTS
Post by Britt on 03/23/15 at 05:55:46

Ugh. That's all I have to say.

We do seem very similar pjp.

I am praying that these symptoms relax some with time. I am in a constant state of panic. I shake 24/7, even when I'm sleeping. This has all only been the past 3 months, although I had an episode similar to this 5 years ago that lasted 6 months.

I am wondering if the meds I am on for depression/anxiety are contributing to this. Unfortunately, benzodiazapines don't calm me down. I wish they did. I would do anything to find something to take the edge off and calm me down. I'd have a cocktail, but I don't do well with any kind of alcohol.

My doctor put in a referal this morning for cardiology, so hopefully I'll get the table tilt test soon. I am hoping it is not POTS, but I don't know what else it could be.from everything I've read, it sounds like exactly what I'm going through.

I know they're aren't any miracle medications for POTS, but can anything help with the constant fight/flight feeling? I feel an electric adrenaline feeling going throughout my body 24 hours a day. I can't stand it anymore. The balance issues have me laying on the couch all day until I move up to the bed at night. But because my body is so keyed up, I can't rest or relax, it's just a way to keep the vertigo at a more managable state.

Title: Re: Symptoms of POTS
Post by Britt on 03/23/15 at 07:03:01

If this is POTS, can psychiatric medications help with the anxiety, or do they make things worse?
I'm at my wits end with this relentless anxiety and I am very close to going to an inpatient facility. I'm just not sure if this will help/hinder if POTS is causing this.

Can a "hometown" cardiologists diagnose POTS, or do you have to see a specialist?

I am so scared of the way I'm feeling. I'm worried about being stuck like this forever.

I Would love any feedback.

Title: Re: Symptoms of POTS
Post by sarahkay1111 on 03/25/15 at 17:50:40

Hi Brigitte--have you tried acupuncture? I have been going for a year now, and it has helped me sooooo much! They can treat almost anything, and have signs all over the clinic saying they treat depression and anxiety. I see a doctor of acupuncture who is from China and teaches at a college here. If you go, start slowly with fewer needles, then work your way up. Let me know if you have questions, and I hope you start feeling better soon! --Sarah

Title: Re: Symptoms of POTS
Post by PJP123 on 03/26/15 at 04:01:50

Britt

I sent you a PM, but I wanted to add a hometown cardiologist won't know about POTS. You need an electrophysiologist cardiologist.

Cardiologist = Plumber
Electrophysiologist = Electrician

I went for a full cardio workup and at the end I said do I have POTS and he didn't know what I was talking about. He told me I had to see an electrophysiologist.

You had a brain scan right? I'm having one on Tues. (2nd one in 3 years) because of brain fog/dementia/can't speak right at times and ataxia. I learned I was a carrier for multiple sclerosis but don't know if that mean's I can develop it. Doctor wasn't happy with me going in saying could it be this disease or could it be that disease. He said to stay off the internet and I said I wouldn't know I had Dysautonomia if I hadn't learned of it from the internet LOL!!!

He kept saying "what are you here for today"? I was saying I'm here for all of the above, what direction can you point me in? Not helpful. Doctors only treat what is cut and dry.

Title: Re: Symptoms of POTS
Post by PJP123 on 03/26/15 at 05:02:55

I just read Dr. Afrin used zolpidem for a mast cell patient it's not a benzo.

http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20with%20Slides.pdf

page 59 last line

Title: Re: Symptoms of POTS
Post by Joan on 03/26/15 at 18:07:13

Mast cell degranulation can cause feelings of anxiety and agitation. Increasing antihistamine meds might help. That said, sometimes antihistamines can make anxiety and agitation worse. It's really trial and error, unfortunately. Doxepin might be a possibility to help. It acts as an H1 and H2 blocker as well as having a generally calming effect. It was the first med that helped me early on besides Benadryl.

If you think hearing may be causing the dizziness, there are exercises a physical therapist can give you that might be helpful. My husband had sudden hearing loss in one ear, and it dramatically affected his balance and caused dizziness/unsteadiness. He then had a separate electrical problem in his heart which was fixed with a radio frequency ablation. That was complicated because he had both at once. Following the ablation, his dizziness is gone. He's less unsteady from the hearing problem during the day and if he does his exercises. If you have more trouble with walking around when it's dark, there's a good chance that is due to a hearing problem. If you're having high heart rate, it could be a POTS situation or an electrical one. Do see a cardiologist who specializes in these things, at least to rule it out.

Title: Re: Symptoms of POTS
Post by MGC on 03/27/15 at 10:44:25

Hey Joan, I absolutely agree about seeing someone who can do some testing to rule certain problems in or out. Your mention of your husband's ablation leads to a very good example of why an good evaluation is needed. Ablation helps some folks, but is not recommended in someone with POTS.

Britt and I have exchanged a couple of PMs. I have recommended seeing an Elactrophysiologist if she cannot see one of the POTS specialists. In general, they are more likely to know about POTS than the community Cardiologist.

Title: Re: Symptoms of POTS
Post by Britt on 03/28/15 at 07:45:20

Thanks ladies:)
I am actually going to the Mayo Clinic Arizona this week. I am praying that they will help me figure out what is going on. I can't take this everyday. I keep waiting for my symptoms to get better, but they just aren't :-/. I will keep you all posted.
Thank you for your ongoing suggestions and support. I look forward to feeling more "normal" again soon.

pjp~ I did have a brain scan. The ENT went over the results with me on Wednesday. He was concerned about some white plaque in my brain and wanted to refer me to a neurologist regarding MS :( so scary. I told him I was already going to Mayo this week and he said that was good. I hope to God I do not have MS. Although MS is not really a hereditary disease, it doesn't run in either side of the family. Keeping my fingers crossed. But I do have many of not all of the same symptoms as you do. Keep me posted on your MRI.

Title: Re: Symptoms of POTS
Post by PJP123 on 03/28/15 at 11:52:07

Britt,

I'm having a brain MRI on Tuesday for guess what?? MS. It's autoimmune I hate to say. I pray you don't have it either. I had a scan 3 years ago when I was sick with all this and they didn't find anything..... so I also pray it's not MS, but who cares what the name of "this" is, no one can figure out how to make us feel better.

Also are you taking H2? I stopped again cause of how awful I was feeling in addition to going gluten free and I do feel better. It's a tightrope walk to get meds just right.

Title: Re: Symptoms of POTS
Post by Britt on 03/28/15 at 16:57:37

I hope you do not have MS pjp. I will keep you in my prayers. Keep us updated on the MRI. I know, it's autoimmune. I am going to wait to make any changes to my meds until after I go to mayo. I hope they can figure this out. The doctors here don't know is going on. Spinning wheels. I will keep you poste on mayo. I know they're not great with mast cell. Hope they will know enough to factor it into the equation, or at least not ignore it. Keep me posted on the gluten free. I've heard the paleo diet is good for autoimmune which is gluten free.