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General Mast Cell Disorders Discussion >> Specific Mast Cell Conditions and Those that Mimic Them >> When lying in bed on my side it feels like there's an earthquake
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Message started by PJP123 on 04/22/12 at 08:04:17

Title: When lying in bed on my side it feels like there's an earthquake
Post by PJP123 on 04/22/12 at 08:04:17

Here's another screwed up symptom.  I feel like there's an earthquake (felt a real one last year up in NY from VA) going on. Another way to describe it is I feel squirrely (is that a word).  I feel really squirmish inside my bloodstream.  It happens at night after I take Singulair.  I don't know if that has to do with it or not.

I have not seen Dr. Castells yet but am diagnosed with autoimmune Chronic Urticaria.

Also I have very small vascular veins all over my face.  It makes me look  sick.  I wonder if it's vascular disease in addition or is this maybe TMEP?  Anyone?  I am a redhead and have brown spot all over which I always assumed were freckles.   They never were red like UP and then turned brown.  I have this dream the Dr. Castells would take one look at me and say, yup  you've got it bad.

Today is a bad day, I feel really unwell and unable to cope.

Neurological stuff is so bad... Today I got a call at 10:30 that my son had a soccer game at 10:30 in a town 25 min. away.  I got right in the car and proceeded to get lost and lost again, until I was driving around for over an hour.  We turned around and went home.  The entire ordeal was 1 hr. 45 min.  Needless to say I proceeded right to bed, which is where I spend 90% of my time.  I hate it.

Title: Re: When lying in bed on my side it feels like there's an earthquake
Post by angelloz on 04/23/12 at 13:34:53

It sounds like you had a rotten day :-/  
I have had the sensation that the floor is moving/ rolling underneath me. Symptoms can be so strange and scary.
Don't be hard on yourself. Rest and do one thing that makes you smile. Remember some days are better than others. Hold on for those better days!
Angelloz

Title: Re: When lying in bed on my side it feels like there's an earthquake
Post by iamnotalone on 04/26/12 at 17:58:33

PJ;
It sounds like maybe the Singulair might be the culprit. I take it in the AM, but with no ill effects. We are all unique in how our meds  affect us.
As for TMEP- those red/brown "freckles" sound like the T in TMEP.(telangectasias) A skin biopsy is how I found out. I had chronic hives for a long time, then the "spots", etc.
After getting on the antihistamines, finding great advice here, learning my triggers, and trying to stick to low histamine foods, I dont get the spots nealy as bad, and havent had a bad case of hives in almost a year. People used to look at me like I was a leper. SO--- hang in there, there IS hope ! ;)
lori

Title: Re: When lying in bed on my side it feels like there's an earthquake
Post by Joan on 04/26/12 at 18:28:16

Sorry you're having a rotten day!  Before I was diagnosed I used to worry I'd go somewhere and not be able to find my way back, so I understand how scary and frustrating that is!  If you can take more antihistamines, and people report that hydroxyzine is the most helpful for brain fog, that might help with several symptoms.

You could try taking your Singulair in the a.m. and see if you have the same symptoms.  Think about what you ate and did before you got lost, in case there's a trigger you weren't aware of before.

Hope tomorrow's a better day!

Title: Re: When lying in bed on my side it feels like there's an earthquake
Post by kimtg68 on 05/02/12 at 04:09:22

So sorry PJP123 for what you are going through. Although it's rare for me, I have gotten lost a few times. Mostly what happens with me is I can be driving down a road that I've driven on a gazillion times before and all the sudden it feels like I've NEVER been there before. Everything looks foreign to me. It's freaky! I, too have had brief moments where I thought the earth shook a bit but I know it's just me. My family thinks I'm a complete nut job! LOL
I sure hope that you get some answers and the proper medication and get to feeling better.
Kim

Title: Re: When lying in bed on my side it feels like there's an earthquake
Post by Rocky 9801 on 05/29/12 at 17:13:34

PJ -
Dr Theoharides spoke at the midwest masto support meeting on 5/12. He polled the attendees about tremors or electric type shock sensations. About half, excluding me, responded positive. I lived in california, am a geologist, and know exactly what an earthquake feels like. I experienced this feeling again about 2 weeks prior to the masto mtg while standing in a parking lot with 5 other people. and I said "did you guys feel that?!" They all looked at me like I was stoned. (BTW...we just left an AA meeting) When Dr Theo asked about odd sensations, I did not think about that event, as I had simply written it off as a balance issue. I have had slight balance problems since heart attack and masto dx. I went from taking no daily rx to taking 6 literally overnight; 4 more were added with the masto dx of ISM, and attribute it all to meds.

Short version - sounds like alot of my symptoms - could be meds, could be masto. It is taking me a long time to figure out which is which. So far the "earthquake" has only happened once.

Being a geologist, and having left cali 21 yrs ago, I kinda got a kick out of it.   :)

Title: Re: When lying in bed on my side it feels like there's an earthquake
Post by PJP123 on 05/30/12 at 07:24:01

@Rocky

I love having my symptoms validated here by wonderful people like youself.  Until I found this forum, I was very close to allowing myself to be diagnosed as mentally ill.  There was no other explanation for my symptoms so it must be in my head.  Yeah, it's in my head.  And heart, stomach, esophogus, skin, bones.

PJP

Title: Re: When lying in bed on my side it feels like there's an earthquake
Post by sharon on 06/28/12 at 13:46:29

Feeling like an earthquake!
I get what feels like my body is vibrating.   Usually starting in the stomach area and moving out to my limbs.
Does anyone have similar sensations?  

I have a diagnoses of MCAS from Cincinnati Childrens, Dr Von Tihel.

Title: Re: When lying in bed on my side it feels like there's an earthquake
Post by Riverwn on 07/31/12 at 08:10:59

Hi PJP!!
We can have some pretty strange symptoms cant we :)  OK, for one thing, I have that strange sensation of rocking when laying down--if you take note you will see it happens usually when you lay on your left side (because it puts a strain on the heart) Change sides and see if that helps. Another tip, take another dose of your "rescue" antihistamine and see if that helps your syncope (dizziness).. Syncope will feel like rocking when you lay down but medicating that feeling will help stop it.

Those small vascular veins?? Yes thats how TMEP looks (I have UP over my general body and TMEP on my back left shoulder and left face/chin area). The area on my back can drive me crazy feeling like ants under my skin but antihistamines help me feel better. Look up the pics of TMEP online and it might help put you at ease.

There are 3 or 4 rashes of Masto. First there is a reddish pinpoint one called Petechai. I have that under both arms, high.

Then there is the TMEP of course.

There is the rash made of freckle looking areas, some look like blood blisters.   I have that on my chest, tummy, back, shoulders, and face and it is spreading. This rash and the next are the two most common Masto rashes.

The one I really dislike is the rash made of brown flat spots--sometime they look like dirt and I want to peel them off. I have that on my thighs and legs and it spreads too.

Joan is right about the brain fog and using Vistaril to feel better, I take it twice a day and it helps a lot! I hope you feel better soon and learn how-to control all of this to have a wonderful life :)
hugs
Ramona

Title: Re: When lying in bed on my side it feels like there's an earthquake
Post by PJP123 on 07/31/12 at 16:33:05

@Riverwn,  Yes it does happen on my left side.  Do you have POTS by chance?  I don't remember your history.  Thanks for the info on rashes.  I'm going to take a good once over in the mirror of my back.  I never look there.  Thanks again.

Title: Re: When lying in bed on my side it feels like there's an earthquake
Post by Riverwn on 08/01/12 at 08:55:12

Hi PJP !
Yes I do have POTS but its better as long as I am not reacting. From one spotted person to another   ;D
hugs
Ramona

Title: Re: When lying in bed on my side it feels like there's an earthquake
Post by PJP123 on 08/18/12 at 09:00:58

Just to help anyone down the line who can relate to this feeling I found out that it's what is called tremulousness and is a symptom of POTS.  I'm in bed again at 4:00 in the afternoon cause I'm so dizzy and I can't be upright any longer.  I'm at such a loss as to what to do.  Antihistamines make me more tired.  Will sodium cromolyn help with POTS?

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