New Episodes - Has Anyone Experienced Anything Like This???

[suziebear]

Hi everyone, A random Q but I am starting to get really scared.

I have been diagnosed with POTS and been treated for it for a year now.

I am currently not on any medication as I just can't seem to be able to tolerate anything. Very normal for me. I am extremely senstitive to medicaiton.

I have been having these attacks / episodes that are becoming more frequent and was wondering if anyone else had anything at all similar.

I will be sitting doing something, computer / TV / reading / nothing at all even and out of no where have a bad chest pain (or at least worse then the rest of the time). From there I get a really hot burning / flush / hot feeling in my chest / throat / arms / face / head and then it turns into a hot flush. Sometimes I then get stomach cramps (and TMI but need to go to the toilet quite badly), sometime some pins and needles in my hands and always nausea.

My heart rate allways increases greatly (this morning to 131 without me moving / standing up etc so not a postural increase) and my BP drops then goes back to normal for me. Not a huge drop - my normal is 90/65 so it may go 85/60ish. I have a hand held ECG machine from Omron and I use this to check what my heard is doing. It comes back with fast heart rate (knew that anyway) but stable waveform so I guess that is at least ok.

Then it takes hours to settle down - sometimes not to the next day. These are really starting to scare me.

I was tested a few weeks ago for MCAD / Systemic Mastocytosis as part as of my POTS but it seems all the results (from bone marrow biopsy) are coming back normal - story of our lives right.

Was hoping someone might have some answers or maybe have had similar things???

If you have every had any episodes even remotely similar to mine can you please share your stories? I am really starting to get scared by these.

Hope you are all having great days.

Thanks for all your support.

Susan.

[suziebear]

No one at all ??? :-(

[firewatcher]

At my worst, I had episodes like this too: flushing, tachy, sudden loose stools, etc. They calmed down once I found the right medicine combo (klonopin and inderal + singulair.) I was also tested for mastocytosis and it was negative. I don't have anything to give, other than understanding. Hang in there!

[kayjay]

Sounds like my "adrenal surges" sorry that you have this... very scary. I also am taking klonopin at bedtime but a small does of a betablocker (nadolol) Has helped. It somehow blocks the adrenaline. I don't know of any natural help. I had to take meds. I currently am weaning off the klonopin to see if I still need it. but i think I'll be on a low dose beta blocker for life.

On thing to consider with meds is to not give up on them too soon. It took me MONTHS to get used to the beta blocker but I know I need it. Best wishes,

[skiberthoud]

Sorry to hear you are having these worrisome episodes. My episodes have some similaritis. Sometimes mine seem to happen without postural changes as well. I also experience the nausea and cramping, HR and similar BP changes. And yes, the hot flash - rip my clothes off! I haven't experienced the chest pain. I imagine that can be really disconerting. I have had the tingling, but I also get head to toe muscle twitching and tremors. My episodes seem to last 1-5 hrs. As far as answers, I have none. But you asked for stories, so know you are not alone. The inconsistancy is what I find so hard to deal with - and I hate being constantly in tune with how my body feels. I hope you are able to find some reassurance and peace. Take care of yourself...

[JanetM]

Susan I have these episodes a LOT! I get exactly the same symtoms. Worse around my period for sure. The hot burning tingling sensations are horrible. I have found a samll (2.5mg) dose of Xanax has helped but anymore that that makes me too tired and sleepy. I have also found Ibuprovin a help. My doc also gave me Lexepro as he felt what I was describing was more like anxiety. However I have not found ANYTHING that makes it stop completely. I wish I could tell you I had. Its almost like my blood is too hot for my body! My chest, upper arms, face can get red. It is generally "dry" flushing. I too have been tested for MCAD but tests were "normal" I get pins and needles also which travel up into my head. Horrible!! And a popping Fizzing sensation in the back of my neck. I am waiting to see a POTS specialist around the end of this month and if I find out anything new I will let you know.

My symptoms only kicked in last December after I had both the regular flu vaccine and the Swine Flu vaccine within two weeks of each other. I got VERY sick and while I have improved somewhat I am still getting the hot flushes and ALWAYS the digestion/bowel problems. Also a heavy fullnes in my tummy which I put down to blood pooling. Try some Mottilium for the sickness.

I hope you are feeling a little better and all I can say is try not be scared because if a few of us have these symtoms then chances are they are "normal"

Fingers crossed I get some information from specialist that I can share with you x

Janet x

[sue1234]

My first thought with unprovoked adrenaline surges is a pheochromocytoma. If you haven't been checked for it, ask your GP, cardiologist, or especially an endo if you have one. I don't think any of them will say no.

The other thing I think of, but can't explain the bowels, is a possible hypoglycemia episode. Can you check your blood sugar at one of those times?

[delphicdragon]

I get these all the time. They were much worse during puberty and have since subsided. I used to get them 2-3 times a week and it's now down to 2-3 times a month, often around my period, but there is no real trigger. Sometimes cold foods can set my stomach off into this "fit" especially if I combine something cold with something greasy. Thought it was my gallbladder for the longest time (and it still might be) but I've yet to get it checked. Dairy in the AM will also set these off, but many times not until hours later. Usually I get really hot and nauseated, then my stomach starts making weird noises and I have to rush to the bathroom. The only thing that really helps is lying down quietly for a while afterward, sipping water. The episodes last between 1 and 3 hours and often I am SO tired after them I nap.

I'm still not sure if the need to have a bowel movement causes these (they are worse when that end of things isn't working regularly) or if they cause the need to have a bowel movement.

One thing I have noticed is that teensy amounts of alcohol calm it down. (Like a sip or so) Often I can't eat of drink when these happen, but a few drops of something strong on my tongue can relax me enough to make the next few hours bearable. I've been having them for at least 10 years, so if you have been tested for other more serious things, I would assume that it's the POTS. :-/

Sara

[janiedelite]

It sounds like the type of flushing and diarrhea episodes my mom gets which is associated with her carcinoid syndrome. If you haven't ruled that out already, you can ask your primary doc to run a chromagranin A blood test (they used to rely on urinary 5HIAA's but it's only reliable if you have an episode during the 24 hours you're collecting your urine. CgA's show if you've had carcinoid-related activity over the past week.) Just a thought ... either way, I hope you get to the bottom of this!

[lieze]

I'm starting to have these too just out of the blue.

I looked up panic attack right after the last one and it described it to a "t" whether it is POTS related and just setting off a panic attack type reaction in me I'm not sure but I'm trying not to worry too much about it although it is debilitating at the time.

[Tammy]

Klonopin is what seems to help with these the best. Must be brand name Klonopin, not a generic, which you can do some research on.

[juliegee]

Hi everyone, A random Q but I am starting to get really scared.

I have been diagnosed with POTS and been treated for it for a year now.

I am currently not on any medication as I just can't seem to be able to tolerate anything. Very normal for me. I am extremely senstitive to medicaiton.

I have been having these attacks / episodes that are becoming more frequent and was wondering if anyone else had anything at all similar.

I will be sitting doing something, computer / TV / reading / nothing at all even and out of no where have a bad chest pain (or at least worse then the rest of the time). From there I get a really hot burning / flush / hot feeling in my chest / throat / arms / face / head and then it turns into a hot flush. Sometimes I then get stomach cramps (and TMI but need to go to the toilet quite badly), sometime some pins and needles in my hands and always nausea.

My heart rate allways increases greatly (this morning to 131 without me moving / standing up etc so not a postural increase) and my BP drops then goes back to normal for me. Not a huge drop - my normal is 90/65 so it may go 85/60ish. I have a hand held ECG machine from Omron and I use this to check what my heard is doing. It comes back with fast heart rate (knew that anyway) but stable waveform so I guess that is at least ok.

Then it takes hours to settle down - sometimes not to the next day. These are really starting to scare me.

I was tested a few weeks ago for MCAD / Systemic Mastocytosis as part as of my POTS but it seems all the results (from bone marrow biopsy) are coming back normal - story of our lives right.

Was hoping someone might have some answers or maybe have had similar things???

If you have every had any episodes even remotely similar to mine can you please share your stories? I am really starting to get scared by these.

Hope you are all having great days.

Thanks for all your support.

Susan.

Hey Susan-

Sorry you are dealing with this. I wondered about MCAD as I read your post & saw that you had that ruled out. I have a few questions. Who (what kind of doctor) did your mast cell testing? I ask because it seems like there are so few who know what to look for- frustrating! The fact that your doc went so far as to actually perform a BMB tells that you DID have a high or borderline serum tryptase test at some point. A high level can indicate mastocytosis, a recent episode of anaphylaxis, or MCAD. Mastocytosis has been ruled out- thank goodness- but I wonder if MCAD could really be behind your episodes.

Was your blood or urine checked for serum tryptase OR methylhistamine within an hour or so of an episode? So often tests are performed at a time when symptoms aren't present and don't really reflect what you are actually dealing with. ALSO, and this is a big one, many are given the MCAD DX based on the clinical picture alone AND how you respond to the treatment.

I see that you are unable to tolerate meds. We had another member actually DXed with a medical condition where she was genetically unable to synthesize medications. They were truly dangerous for her. I am so sorry I can't remember the name of this disorder. It's DXed with a blood test. That's certainly something you should look into. (She also had MCAD-like symptoms.)

If you can tolerate a non-drowsy antihistamine, like zyrtec- consider taking one during an episode to see if it helps. Your reaction would be very telling IF you can tolerate it well enough to get a reaction.

Last question, do you have any other symptoms of mast cell disease: "D", bladder irritability, GERD, regular allergy-type symptoms w/o allergies (coughing/sneezing), throat or chest tightness, hives? If so, this further points to overly reactive mast cells.

Once again, your episodes sound frightening. I'm so sorry you're having to deal with this.

All the best-

Julie

[jjb]

Well ... I really hate to mention this but since we have experience with this, there is the possibly of simple focal seizures causing these symptoms.

Here is a link:

http://emedicine.medscape.com/article/1184384-overview

Here are the symptoms of sensory & autonomic seizures:

# Sensory simple partial seizures3

* Somatosensory-primary sensory cortex seizures usually elicit positive or negative sensations contralateral to the discharge.

* Symptoms associated with seizures from the postcentral gyrus include tingling, numbness, pain, heat, cold, agnosia, phantom sensations, or sensations of movement.

* Abdominal pain usually originates from the temporal lobe, and genital pain from the mesial parietal sensory cortex.

* The posterior parietal cortex is the likely origin of limb agnosia.

* Supplemental sensory-secondary sensory cortex seizures may have ipsilateral or bilateral positive or negative sensations or vague axial or diffuse sensations.

* Visual-calcarine cortex discharges produce elemental hallucinations including scintillations, scotomata, colored lights, visual field deficits, or field inversion.

* The visual association cortex is the probable location of origin of complex visual hallucinations and photopsias.

* Auditory SPS from the auditory cortex typically are perceived as simple sounds, rather than words or music.

* Olfactory-uncinate seizures originate from the orbitofrontal cortex and the mesial temporal area. Perceived odors are usually unpleasant, often with a burning quality.

* Gustatory seizures usually are associated with temporal lobe origin, although the insula and parietal operculum also have been implicated. Perceived tastes are typically unpleasant, often with a metallic component.

* Vestibular seizures originate from various areas, including frontal and temporal-parietal-occipital junction. Symptoms include vertigo, a tilting sensation, and vague dizziness.

* Psychic SPS arise predominantly from the temporal and limbic region, including the amygdala, hippocampus, and parahippocampal gyrus. Perceptual hallucinations or illusions are usually complex, visual or auditory, and are rarely bimodal.

o Includes the déjà vu and jamais vu phenomena

o Emotional: Fear is usual, but SPS can elicit happiness, sexual arousal, anger, and similar responses.

o Cognitive: These responses include feelings of depersonalization, unreality, forced thinking, or feelings that may defy description.

# Autonomic simple partial seizures11

* Abdominal sensation phenomena

o These are common in mesial temporal epilepsy but can arise from the operculum and occipital region.

o Symptoms include nausea, pain, hunger, warmth, and "epigastric rising" sensations, and may be associated with piloerection (ie, gooseflesh).

* Cardiovascular sensations12

o The most common cardiac manifestation of any seizure is sinus tachycardia with arrhythmias, with bradycardia occurring infrequently.

o Some patients have chest pain or a sensation of palpitation that mimics cardiac disease.

o Respiratory inhibition has been reported with electrical stimulation of the temporal regions.13

* Pupillary symptoms - Miosis, mydriasis, hippus, and unilateral pupillary dilatation

* Urogenital symptoms

o Seizures from the superior portion of the posterior central gyrus can result in genital sensations, while sexual auras arise more from the limbic or temporal regions.

o Ictal orgasms have been reported, although rarely, in association with seizures arising from various cerebral locations.14

* Other autonomic symptoms - Rarely perspiration, lacrimation, ictal enuresis, or flushing

Jen