Mast Cell Disorders Forum - Symptoms of POTS

Britt

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Re: Symptoms of POTS
Reply #15 - 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.

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Britt

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Re: Symptoms of POTS
Reply #16 - 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.

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« Last Edit: 03/23/15 at 11:19:21 by Britt »

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sarahkay1111

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Re: Symptoms of POTS
Reply #17 - 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

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PJP123

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Re: Symptoms of POTS
Reply #18 - 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.

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PJP123 Guiding Light Offline I Love YaBB 2! Posts: 193	Re: Symptoms of POTS Reply #19 - 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
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Joan

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Re: Symptoms of POTS
Reply #20 - 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.

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Joan

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MGC

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Re: Symptoms of POTS
Reply #21 - 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.

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Britt

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Re: Symptoms of POTS
Reply #22 - 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 Undecided

. 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 Sad

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.

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« Last Edit: 03/28/15 at 11:37:15 by Britt »

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PJP123

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Re: Symptoms of POTS
Reply #23 - 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.

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Britt

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Re: Symptoms of POTS
Reply #24 - 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.

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« Last Edit: 03/29/15 at 06:49:13 by Britt »

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